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