Treatment Fatigue

Dear Ones,

It has been too long, I apologize.

Living our day to day life, celebrating Christmas, making decisions about the house renovation, that's about all I have been up to, and it is about all I could have been up to:-)

I am finished with chemo, with three weeks of recovery since my last infusion. Radiation starts with a simulation next Wednesday and for real the following Monday, it is slated to last five weeks, five days a week.

I'm hunkered down inside somewhat these days. It is winter after all - a dark, fallow, resting, quiet time.

Reaching out has gotten more challenging. I so love to connect with people and it is simply exhausting too. This journey is in its eighth month, and I'm calling what I am feeling, treatment fatigue. It's been a long time of living in our alternate universe and I am becoming tired on another level beyond the physical and emotional.

I'm not complaining, simply expressing and explaining. I am also processing, and figuring out where I am in all of this, as I continue to be gentle and allow. Allow that take-out is ok some days, allow that I am still loved and remembered, even when I feel isolated, allow that a nap really is ok, allow the frustration, allow the sadness, allow the fears.

I can even allow that mild agoraphobia is ok, and that I'm rebuilding and it might be a time when being deeper inside, and even a bit isolated could be ok.

There are voices in my head that are debating that. I'll be gentle to my voices too.

I am so grateful for the freedom to have this experience. There are voices in my head who think I would be transformed and become a new improved version of myself, if only I was doing this better.

Well, I'm doing this as well as I can, moment to moment, and I don't know if that is going to happen, as far as I can tell, I'm still Amelia. This isn't the end of the story, I haven't even completed this chapter.

I can say, I am getting better and better at simply being Amelia, and having that be ok.

Blessings to you all,


Amelia

- There are huge flocks of wintering ducks and swans playing on the South River by our house, I would so love to find the metaphor, connection, a story to tell. My brain is fuzzy though, so I will simply enjoy all the beautiful birds.

Today we had mallards and wood ducks and buffleheads, tundra swans and a mass of mergansers have arrived. Watching the diving ducks and tipping swans is simply a delight.

Christmas Update from Longwood Gardens

Dear Ones,

Longwood Gardens has become our go-to place on our way home from CTCA.  We are there on a Thursday, and I am generally full of steroids and random energy that responds well to a good walk.  Longwood makes that walk very pretty and very special.

The quick update, it is a week out from my seventh infusion.  I am well, and feeling so many of the random side effects, muscle aches, neuropathy, random low-grade cold symptoms, GI pain.  All and all though, nothing too concerning, and my energy is good.  Probably too good, I continue to be challenged to rest enough!

I have one more infusion of Taxol, that will be the week after New Year's.  Wow- how quickly it has all gone, a blessing in itself.  Then on to radiation, we are expecting Tomotherapy, which allows a shorter series of treatments and is safer for surrounding organs, and that is expected to start in early February.  My sister Polly will be here to take care of Sarah, as we will need to be at CTCA four nights a week.

We are preparing to have a lovely Christmas. It has turned out to be wonderfully full, so this year we will celebrate Christmas Eve Eve, as well as our traditional Christmas Eve with dear friends.  That night as Laura and I go to the midnight service at St. Margaret's, Sarah will be off to Dad's for their Christmas.  Then, we will fly to Colorado to join all of Laura's family in Creede and begin the celebrations anew! From what was looking like a small, uneventful Christmas, since we are in a rental and have none of our stuff, it has become a delightful event.  For me, the rule simply has to be rest, rest, rest, so that I can enjoy it all.  Have I mentioned the herd? Yes, horses in Colorado, so Sarah is very excited!

Here is a picture tour of Longwood from our last two visits.  It is a magical place and we are so grateful to have it to visit!

Photos start with our visit last week. It had been such a full day that we didn't arrive until late afternoon, so we got to enjoy the magical lights.

Daylight visit on Thanksgiving Day:

 

 

Much love, thanks for sharing this moment of beauty, as well as our journey,

~Amelia

You Are Not Twiggy

Dear Ones,

We were in to see the head of radiology last Wednesday, he is terrific in so many ways, and he has a level of judgment regarding my body size, about which he feels no compulsion to suppress his opinion.

Twiggy

Which meant that when discussing scheduling the radiation simulation, he told me we should wait until the end of January. I'll paraphrase: "because you are not Twiggy and once you are off steroids there could be a big change in your fluid accumulation."

My response. "Nope and I am a lot healthier that she probably was."

I'm so proud of myself.

I also got to refuse to be weighed, twice. And manage some pushback from the NP, who "can't really judge how I am doing nutritionally, since she doesn't have my weight." What-what-what? Are you kidding?

I write this as we were resting and relaxing (can't say restoring) up in Infusion while I get my premeds and Taxol. It has been a relatively smooth and peaceful day, and it is infusion 7 of 8, nearing the end of chemo-cleanse.

What else is up Amelia?
Well, I find I am standing on my soapbox. It is a good sturdy one that will fully support me. I notice how fearful I am about talking about my body issues and image, the critical voices get very loud here.

"No one wants to hear from a fat person about weight issues, you have to be skinny to be listened to." This statement values skinny over fat as well as devalues and judges my body size as having a criteria that must be met before I open my mouth.

"Healthy and fat? Impossible."
Nope, very possible, here I am doing it. I keep hearing how great I look, that is a reflection of the strength and health of my body, even though some cancer cells developed in my body. Read the book I blogged about.

I am so deeply trained to accept and self-judge based on the Twiggy-normative culture I grew up in. I was around for some awful things that are a result of this culture.

• Such as.... miserable and incessant teasing from elementary through high school.
• My first diet, prescribed by a doctor, in second grade. I was chubby, yes, but a diet for a seven year-old?
• Learning to sneak food and binge as I began eating to self-soothe. Looking back, I see that I had lost (or never learned) a healthy way to interact with food, so was looking to it for comfort, instead of nutrition.
• So many diets and so much weight loss I can't count.
• A complete loss of connection with my body, so eating when hungry and stopping when full became a complete unknown.
• Basking in the glow of being slimmer, losing weight, becoming a better person because I lost weight.
• You know though, I have never, ever, managed to get to the 135 the weight charts suggest. Not even close. Like 169 is as close as I have gotten, that was after months of eating optifast jello or some such crap. Yea, I lost weight. My life crapped out. I dropped out of college. I gained back the weight.
• I watched, as my parents responded to the pressures to be slim. My father turned yellow from drinking so much carrot juice. My mother was prescribed diet pills when pregnant. And from the pictures I've seen, she was relatively small. But hey, in the pictures of the time, early 60's, everyone has a rocks glass and a cigarette -so what's a bit of speed to go with it?
• My grandmother worked so hard to lose weight. (I think she was 5'7", 160.) She regularly shared her judgment, telling me that it was too bad there was no way to put me and B, my skinny best friend, in a homogenizer and even us out. As I write that, I wonder about judgement for too skinny also, yet it cut into me deeply at the time, and I just heard I was too fat. I understand; she had family members who were cruel and mean to her about her body and habits, they hurt and scared her, and I was often around to see it and imprint the judgment.

So much judgment. We are trained to believe that thin is better, healthier, smarter, prettier and simply better.

Is that true?
Really true?

'Cause I am sitting in this body; my one and only game piece for this here game of life I am playing with you all. It is a big body. It has gotten me far, however I am usually yelling at it or judging it, in my head. No, it can't do those wild yoga poses, nor can I run a marathon. It does walk and hike with me happily. I am strong and have incredible endurance. It is surviving an intense chemo-cleanse quite well actually.

"You are so pretty, if only ..."
#^]+*>* off.

My Brother John

I am beautiful. Period. 

Amelia with dieting Daddy sailing ~1972

Amelia and Polly Ketchikan, Alaska 1972

Polly and I this summer

I'll end with a little genetics lesson called Amy, John and Polly. Amy (yea that's me) and John are genetic siblings, we really look alike and have both dealt with weight issues. Polly was adopted as an infant, so same parents, same food exposures, same environment, different genetics. Polly at 5'3" just barely managed to get to 150 when she was pregnant with a 9lb. baby.

Thanks for hanging with me as I explore this process out loud.

Love,
Amelia

A Few Good Reads

Dear Ones,

A few great books that I have read, and continue to read and enjoy this year. No particular order or such, take what catches your attention, disregard the rest.


Health At Every Size: The Surprising Truth About Your Weight by Linda Bacon, PhD

Because this is what it is about, with a lot of of science and real information, delivered with gentle understanding and true compassion:

The Live Well Pledge

Today, I will try to feed myself when I am hungry.
Today, I will try to be attentive to how foods taste and make me feel.
Today, I will try to choose foods that I like and that make me feel good.
Today, I will try to honor my body’s signals of fullness.
Today, I will try to find an enjoyable way to move my body.
Today, I will try to look kindly at my body and to treat it with love and respect.

If you, or anyone you know has gotten lost in the world of what the medical system says is the truth and has lost track of their internal knowing and trust for their body, this is a must read. I have spent so many years trying to fit my body into the format that the doctors and our society deem acceptable. This has absolutely wreaked havoc on me. It has emboldened the voices in my head to be simply awful to me on a regular basis and it has had such an effect on my self esteem as well as my body. Now this book. Thank you Linda Bacon.



This is quite a book. Overcoming Underearning by Barbara Stanny focuses on money, and how we treat our money... ie: how we treat ourselves.... hmmm.... So much good to look at here, it is amazing. And guess what, money, bodies, life... all connected, all related, work in one neighborhood, benefits the others. We have been so interested in this work that we did the workshop over the last six weeks. That took the process so much further; I can't recommend it enough.

If you are curious, take a look. It really is a good read, and taking a look at how I value myself, my money and my assets continues to be a very worthwhile endeavor. Apparently it is also ok to want to make more money and have more than enough money... who would have thought it?

Now, for a bit of fun, Enslaved by Ducks by Bob Tarte is simply a delight. Reading to each other has been one of the ways that Laura and I have stayed connected, taken care of each other and simply enjoyed ourselves during the last few months. This is the first book we read together and one of the best. Laugh out loud worthy.

The Bucolic Plague, by Josh Kilmer-Purcell is another hilarious read. These two fabulous Manhattanites take themselves to upstate New York, spend way too much money and buy themselves an 1802 mansion and a farm.

Their experiences, challenges and all are great entertainment, another book Laura and I have read to each other.

They ended up with a reality TV show as well. It isn't as fun as the book, because they simply need Imago counseling for their relationship far too desperately, and listening to them bitch at each other gets old quickly. However watching the show to see the marvelous goats and llama, the land and the town is certainly entertaining.

Goat Song: A Seasonal Life, A Short History of Herding, and the Art of Making Cheese, by Brad Kessler is a literary marvel. On one hand, it is simply a book about getting to the country and making cheese, on the other it is a wonderful history and chronicle of goats, they have been with us for so long that they are in many ways embedded in our language and psyche. In this book we get to learn so much about why this is, and it is truly eye-opening.

And, as you can imagine, from the last two books, we would really like to have goats. Ain't happening on our tiny plot in Highland Beach, but someday...


Well, this will end my reading notes for this afternoon. I would love to hear about what you are reading, our Kindle is always looking for more content.

much love,
~Amelia

Demo at 1327

Dear Ones,

It is very exciting to share that work is really getting going at the new house. The demo is almost complete, a full dumpster is leaving and another will probably arrive to take all the parts of the house away that are no longer needed. Hmmm... I've been doing that in so many places this year...

What doesn't show is that the wells have been drilled for our geothermal system. That is one of the most exciting things about this project - warmth and cooling from the ground!


Moving inside, we have open ceilings, the old kitchen gone, the wall between kitchen and the living room has been removed, and there are lots of old, vibrant, colors showing through. She has good bones and some other parts... that need attention.

This view is from the back door looking through to the front of the house.



Speaking of which, now there is a temporary support in, because the beam above is warped and cracked and, the post it is standing on is only supported by a cinder block on the dirt floor of the basement. Not expected, and so it shall be fixed with a new beam and proper support in the basement.

This view is from the future master closet through dining room to family room.



What a pretty color. These are the exterior parts of the front porch that were covered with paneling when the porch was enclosed. That color will return in the exterior in some way.

We also discovered a window at the end of the bathroom, and exterior siding is visible from the master bedroom. This information implies that the master bedroom was also an addition. Frankly, half of the house has been an addition that was cobbled on at one point or another. Now, I am thankful for that, as it gives me about a 1350 square foot footprint to live within. The original house was a trailer in 1939 from what we have been told, so this is a vast improvement.

And finally, some more pretty colors, this is my current knitting project. I am making a blanket of many knitted "quilt squares" from a pattern called Mitered Crosses. I think I have seven squares done here, and am looking to get to at least twelve. The colors are many skeins of Noro Silk Garden and the gray is Noro Retro.

It helps me to have something to keep my hands busy with!

Besides that, and recovering from chemo cleanse, we are very busy doing all the shopping and deciding for the house. Floors, kitchen, bathrooms, appliances.... so much to choose. When possible, we are going green and repurposed or recycled. Second Chance, Habitat's Restore and The Loading Dock are my new favorite places.

Right now we are looking for a new old post that will support the end of that beam from above. We may have to go to some Pennsylvania storage yards to find it though, haven't found one locally as yet. eBay is great, and shipping cross-country isn't a viable option.

Well, I hope you are all well and enjoying your holiday season. Updates on the house, treatment and the storage container situation will continue as I am able to get to the computer and get writing,

much love,
~Amelia

Overwhelming Feelings Practice, or Gratitude on Steroids

Good Morning Dear Ones,

It is just 5am this wet and chilly morning here in Annapolis. My last few days have really felt miserable at times, I have been simply feeling done.  Between the continuing, seemingly forever process of treatment and follow-up that comes with my experience of a breast cancer; the recent destruction of an unknown amount of my stuff; and the news... the horrible way people in power, large and small, are treating other people... I have really found myself in the pits.

Right now, I am wide awake, because it is a treatment day and I was up for my first dose of steroids at 1:30am.  At 4am I was wide awake, and I have surrendered; there is no more sleep for me.

I have been struggling to respond in a way that shifts these feelings of sadness and despair.  What does it is shifting my focus to gratitude and the blessings in my life.  I have been creating this list in my head for the last couple of days, it is time to start recording it, so that is what I will share this morning.

I am Grateful For:

Being here on this earth each day, having a fresh opportunity to love and learn and share and appreciate all that life brings me.

My blessed daughter Sarah, she is a treasure, so smart, funny.. in a dry and observant way, beautiful, curious and aware of her world. It isn't always easy to be her Mom, it brings me to new and better places, and I am eternally grateful for the blessings of Sarah Elizabeth.

My beloved wife Laura, a jewel in my heart, my lovemate, my partner, my friend.  Laura, who is consistently willing to step into consciousness in her life and our life, she brings me forward as we walk our path together.  She cares for me so well, with grace and flexibility, and we simply enjoy each other's company.  What a blessing my Laura YKR is.
My family, my mother Carol, filled with unfailing love and support on any subject at any time, a friend, a great source of creative ideas and ways to make life the way I want it to be.  Dick, who came to us as we entered adulthood as step-dad, what a gift, another steady, loving and fascinating person in my world.  John, my "we might as well be twins" dear brother, we are so close on a deep energetic level that I can always feel him in my heart, and hear his reassuring and loving words in my head.  And Polly, my best friend as well as precious sister, I cannot imagine my life without her at my side from 3000 miles away, she inspires me and fills my heart with love, and her boys have deep and wide places in my heart, even though they say they will never live on the east coast.

My in-laws, all the Inmans, Diddes and Killips who have welcomed me as family and friend, who have shared their lives and hearts with me, and who have been a steady support to Laura and us, as we walked some darker parts of our journey together.

My father Mike, grandmother Bama and all the other dear ones who are no longer living on this earth. I feel them in my life daily, whether it is in a memory or a thought or a message, you have taught me to love deeply and appreciate so much in this world, and for that I will always be grateful.

And all the other dear ones in my world, especially Kevin who shares the gift and joys and... of parenting Sarah with me, dear Kat, all my friends and supporters, people who send love and people who care, all my dear people on facebook, people who check in, and people I feel from a distance.  All a blessing.

I am Grateful For:

The beauty of this world, sky, sun, water ... rain, clouds, mists and moonlight. Feeling my feet on the ground and feeling all the strength and power of the goddess that is earth, feeling the strength and grace of the heavens reaching down to me. Smelling fresh rain, kicking leaves, walking in all the places this world has provided us, and finding beauty everywhere. Soaking in the warmth and energy of the sun... feeling how moonlight tingles also.  The contrasts of hot springs and rushing cool rivers, tumbled rocks and sand on the shore of the ocean as the waves flow in.

All the growing things on our earth, flowers and trees, gardens lush and gardens bare, fields of crops and big juicy vegetables. A bramble of weeds on a roadside, bright with berries and birds. Tulips and zinnias, peonies, roses, cherries and lilacs, azaleas, redbuds, mums and oak trees, wisteria, birch, pansies and the millions of other beauties of nature, for you I am grateful.

I am Grateful For:

Creatures, cats especially Mao and Lily, the spoiled and talkative creatures that share our lives, who remind me they are not spoiled, they are simply being treated as they should be. 

All the horses who inhabit Sarah's and Laura's hearts and inspire them, you are also deep in my heart these days.

All of the wild ones.

The birds, so many of you are close to us these days.  The mallards, osprey, herons, bald eagles and kingfisher of the summer are now mallards, herons, buffleheads, loons, swans, kingfisher, chickadees, nuthatches, bald eagles, house finch and sparrows of the fall and winter.

The four-legged blessings of deer, especially our little buck who visits so often, and the families in Highland Beach.  Fox, such a frequent and cheerful visitor in my world, even when I just get a glimpse of your tail, I am so glad to see you. Raccoon, from the babies in the chimney this spring to the family that loves to take down the feeders in the rain, thank you for sharing my world, you are creative and amusing and so much more dexterous than dear and entertaining squirrel.

I am Grateful For:

Places, like this wonderful home we are in during this time of transition.  It is a gift to wake to the river and the bay, expanses of water and moonlight shining on it.  Watching weather here is a delight and the home has welcomed, nurtured and enveloped us with such love and support.  Thank you Karen for sharing it with us.

High Mooring, our new home in Highland Beach.  She is just a shell of potential right now, and she is welcoming and excited about our future together. As work gets started, with the architects drawings, the builders suggestions and all the little touches we get to add, she is becoming an absolute delight of a home.  Of that I am certain. She came to me on my birthday, and she is a gift to all of us.

Annapolis, this vortex of possibility.  I arrived here for another life and have created this one.  A beautiful town, near the water, full of interesting people and possibilities.  While I don't know if I would have picked it without other influences, I am grateful to be here.  It is a good home-point, especially as Sarah moves through her education at Key School.

Another place and people to pause and honor, Key has held and nurtured Sarah from kindergarten on, her teachers know who she is and care about fostering that.  Yes, she is a smart one, no doubt, and she is offered chances to learn and is challenged in ways that are so beyond the ordinary and often so creative, I continue to be amazed and grateful.

All the other blessed places of this world that have shaped my life, Rye and NY, the Connecticut coast, California, especially Santa Cruz and Big Sur. Colorado, Laura's hometown of Creede and the ranch and studios.  The pristine beauty and peace of Little Squaw. Sedona, our sacred and safe space. West Virginia, where we met and where we married.  And every spot I get to spend time in these days, we continue to find blessings and beauty in them all.

and I am Grateful For:

The Goddess, and all her angels, saints, guides and way-showers. 

With love and gratitude for all the blessings of this life, known and unknown, seen and unseen, past and future, appreciated and not-yet-appreciated,

Amelia
who knows this will be continuing all day, now that I have primed the process, a blessing in itself.

Be present in all things 

and thankful for all things,

Maya Angelou

Simply Stuff, my PODS Experience

Dear Ones,

Those of you who are on Facebook may have heard of the latest wrinkle in my experience.  It is certainly a problem that could only arise in a state of abundance, for that I am grateful.  For the rest, I am in progress on it all.  This one has nothing to do with the medical system; a change of pace I guess?  As you probably know, all of my "stuff" is in storage containers from PODS in their warehouse as we are living in a wonderful furnished rental and renovating Bay Ave.

It was packed a bit differently than this.

Last week I got a call from PODS.  They were moving one of my PODS and the forklift operator lost control and it dropped from a height of eight feet.  This is a 8'x16' POD; that is a significant drop.

On Friday, some good friends joined Laura and me to take a first look at the contents.  It was the POD that contained a bunch of good antique furniture, the book collection, and lots of stored items like my great-grandmother Amelia's china and all of our Christmas pretties, all my framed art.

The POD door is completely off its track and my "stuff" is spilling out.  It appears it fell on its side and then was righted. Things that were once upright are now on the top or bottom, turned on their sides and lots of the furniture looks like matchsticks.  We haven't unpacked a thing, because upon inspection and with the behavior of the staff at the warehouse location I stopped the process to get legal advice.  This appears to be a significant financial loss, caused by negligence, which is not mine to bear.  However, who is going to bear that loss is a big question that is wide open at the moment.

 cracked beams, broken supports, bowed end, skid marks

And I am struggling. I have really worked to be less and less attached to stuff.  I have given away, sold and tossed so much stuff over the past few years. Before packing all of this up, I winnowed down what was being kept quite significantly.  All of my inside possessions fit into two 8' x 16' storage containers with room to spare (or room to tumble).  My garden stuff went into a third container with plenty of extra room, because I didn't want that in with my good indoor stuff.  And thank goodness - some flying concrete planters would really have added to the damage.

stuff tossed out of storage containers all over the back

There are parts of me that simply wish I could let go of it all and walk away.
The faux-enlightened zen voice, "oh it is just stuff... simply let it go."
The exhausted, victim voice, "Really, breast cancer is enough, chemo-cleanse is enough, I don't have the strength or energy to deal with this, just make it go away."
The sad, depressed voice, "I guess this is what I deserve somehow, and I don't even know how to fight back or fix this, and how to I pay for what feels like a fight to get reimbursed?"

And there are strong voices that say "No, not walking away on this."
"I am not going to let those who were negligent get the benefit here.  My loss needs to be reimbursed. That is what is right, fair and reasonable."

So, I am in a place that I have to trust that what I need to figure this out will come to me, and I will get the support I need.

It is a struggle though, because I don't do victim, don't want to do it for this.  I have pulled myself out of falling into the victim mode through this breast cancer experience a number of times. I know that it doesn't serve me.  Yet in an adversarial situation that seems to be how my side of the equation is often cast.

How do I ask for help, without asking for being rescued?

How do I fight back, without putting way too much emphasis on loss and things and stuff and lawyers and all of that?

This isn't the sort of thing I do, and apparently now it is.

What happened isn't ok, and the responsibility of the loss is not mine to bear.  And no matter how I process and let go of the "stuff", it is a loss, a big loss, at a time when I continue to be offered opportunities to let go, again and again.

I know Spirit is in here.  She is in every part of my life.  I trust her to give me what I need and carry me through this and everything.  I know she is calling me into another place of strength, as well as surrender.

and I'd love to get a peek at the guide book today.

Blessings to you all,

Amelia