Wednesday, November 23, 2011

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

Sunday, November 20, 2011

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

Sunday, November 6, 2011

In My Power, On Steroids

Dear Ones,

Mums at Longwood Gardens
Two weeks ago, Wednesday, was our latest visit to CTCA and as many of you knew, I was a bit concerned because we were changing medications to the next chemo-cleanse drug and that required more conversation about dosage.  It has taken me all of this time to get this blog written, lots to process and sit with I guess.

Wednesday felt like it was test, of the Can Amelia Stand in Her Power? system. As well as a day filled with opportunity, for clarity, knowing myself and responding when things were not as I needed them to be. Laura, of course, got to experience it also and was an invaluable support as well as clarity provider.

So, I need to write all that happened and share it, you are welcome to read on, there are certainly amusing moments in it all. If you don't have the time or inclination to do so, suffice to say, all is basically ok, the new drug experience is completely different, and I appreciate your checking in on me and the blog.

For those who are hanging. Truth is, we knew that there were two issues to be attended to on Wednesday.

First, the dosage. New drug, Amelia's same sensitive system. Taxol is a synthetic based on the Pacific Yew tree. It interrupts the process of cell division in a different way and has a whole new batch of potential side affects. With the Adriamycin/Cytoxan combo I had needed a 25% dose reduction, my NP has said we would need to reduce this dose, however we had to see the Oncologist for that. (He is a great guy, however I have not been confident I was heard by him very often in this process.)

Next issue, a bit more touchy, and frankly difficult to blog about. Weighing.

The only way to explain this, is to take a bit of a detour to the work that I have been doing for quite some time. You see, heck if you know me you know, I carry a fair amount of body weight. This is certainly not my choice, and it has made me very unhappy at times. I have followed medical advice more times than I can count, since I was a young child, and gained and lost more pounds than I care to count. At this point, I am learning to regain my own internal knowings about what works for my body. I have been doing this dance of good thin/bad fat for over 40 years now. It doesn't work. It is now known that the single most predictive factor of weight gain is weight loss and that diets do not work. It is frankly amazing that I am as healthy as I am at my current size. I have an amazing body. My focus is to love and care for my body, speak to it gently, honor it and take as good care of it as I can. There is a lot of science and wisdom to support this, I am doing my best to turn around a lifetime of different attitudes and experiences.

There is much more to write on this and I want to share it in more blogs, and for now I will stick to Wednesday.

So, every time one arrives at CTCA for treatment, they do vitals and blood work.

For the vitals, we had gotten a young nursing assistant, who had an interesting idea of how to develop rapport. One time, as I stepped to the scale, she said... dun-dun-duuuuuuh! (yea, the sound effect, which implies suspense or revealing something scary). She got her head bit off by yours truly, as she explained that she was trying to "build rapport" with us.

Next time we had her, she announced my weight to the hallway outside of the room, seems remembering it without repeating it to everyone was hard. The double number of my blood pressure did not bear repetition.

Let's be clear here, this young woman is not really the problem. She was just the obnoxious yellow highlighter smeared on a problem. Going through all this surgery and chemo-cleanse, I have gained weight; this is really hard for me to hold with love and with the added attention, it was becoming unbearable.

Add to how uncomfortable it is to have gained weight, while knowing I may gain more, I am navigating a new way of being with my body while being smack in the middle of all of Western Medicine's judgements, beliefs and misunderstandings about bodies and weight. This sucks. This is my chosen path. Surrender.

So on Wednesday, this is what I kept communicating to them. That getting weighed was emotionally shredding me. That I was perfectly aware that I had gained weight, it was not unexpected on chemo, yet the weighing and looking at the number wasn't working for me. I was working to be good to my body and take care of myself and I couldn't manage the emotional challenge of weighing over and over, tracking this seemingly perpetual ascent of my weight was painful and not helpful. What I had to keep saying to myself was, "it doesn't matter what they think, what judgements they have, this is what you need to do for you Amelia and it is ok. It doesn't matter what people think."

Prior to Wednesday, I had spoken with my amazing counselor, NP, and friend, Sil, about all of this, as I was clear that I could no longer deal with being weighed at CTCA. (It is important to note that my drug dosages are not based on actual weight so that argument was mute.) I was clear that it wasn't going to happen, so on the way to Philadelphia, I called our Care Manager, to let them know and try to pave the way for that to be easier later.

Hah! I got a compassionate sort of response and no actual help there. The only person who could change that was the doctor. OK, no surprise. What I didn't expect was that nothing had been said to anyone else. When we arrived on the fifth floor to see the Oncologist (at intake) we got another nursing assistant (since my complaint about the other one, doubt we'll see her again.) I had to refuse to be weighed, and got push back about it from the assistant. That got us nurse #1 to come and try to compassionately talk me into cooperating. NO. We end up doing my other vitals, and I am amazed at how low I am managing to maintain my blood pressure through this.

More intake and history and tracking with the oncologist's other nurse. Guess what, I refuse to get weighed again.

So, at this point, I have gone over this point four times before my doctor finally arrives, and I do it again. He talks a lot about standard of care and rules and understanding and .... it is all a jumble for me by now..... and in the end not only lets me off from getting weighed, he agrees that there will also be no reason to get weighed when I am going through radiation in February. (This is actually a bonus, as I know the head of Radiation Oncology has some opinions about my size; he has already expressed them.)

So, now, on to the important stuff.

Dose reduction. We go through it all, and Laura and I parrot back our understanding that it is important for me to get all the drug I can handle, too low dose a on chemotherapy could be useless and not provide the "cure" we are seeking. We talk about all of my side affects from the previous drug. We talk about how I don't take usually any drugs... He agrees to lower the dose, how much I don't know, and will continue to base it on the same pretend ideal body weight number we have been using, and goes to do the calculations off in the ivory tower somewhere. That is the last we will see of him for the day.

Nurse returns with the medication orders, we get to go through all of the details again and kick her our for a few minutes so that we can muscle test my body for the dosage on this new drug, it is a 10% reduction.

My system says ok, the dose is both safe and effective for my body for this round. All clear.... yea right....

Get some good info from the Naturopath, that is helpful.

On most weeks, we have a Nurse Practitioner who we work with, not the Oncologist. At this point, she stops in to say hi. Our room has been a bit of a party for the last hour or two, with so many people stopping in. We have developed relationships with lots of people at CTCA and Laura and I are comfortable in this room, visiting with everyone, knitting and chatting, as we step through all the challenges at the same time.

So, our NP says something about seeing us in two weeks. Ugn... no.... that would be three weeks for the next treatment... Well, now that we have crossed the two expected hurdles, we discover that the doctor thinks I should be getting the Taxol on a dose-dense schedule every two weeks.

I get upset on this one immediately. My body, my energetic system and my entire life, especially as a parent, has been prepared for the 3 week interval. They gave us that information in the beginning, and I have confirmed it twice since then. I'm not coming back in two weeks, I am coming back in three. All we get back is that the doctor has good science about doing it dose-dense and that is how it is to be done. Uh... no.

This really took another batch of my own power to buck the system and say "no, I will be back on the schedule we arranged in August." I used more external things, like my sister coming in February to care for Sarah while I am getting radiation five days a week in Philadelphia, and how I couldn't change all of those things.

What was really going on underneath was that I couldn't change the timing my body was expecting for this process, I couldn't speed it up.

So we got to go through that issue with the scheduler and two nurses, and the doctor, as he is the only one who could change the orders. We return in three weeks. I don't know if we will have to revisit this the next time. We were two hours late for infusion by now and we wanted dinner and to get moving on the process.

And have I mentioned... there is a significant risk of allergic reaction to Taxol. So to manage that, I started taking steroids the night before the infusion and was taking them throughout the day... So all of this was done on steroid brain, yuk.

And, just for fun, my body has identified the fact that it gets sick when I go to CTCA. So all of its protective systems are on high alert for poison. Since so many of the systems are damaged, that seems to leave the major work to my olfactory system, my sense of smell. It had been very sensitive and many things made me nauseous, however at CTCA it was on overdrive. I couldn't be in the cafeteria, I found I couldn't eat much of anything, and food smells were making me gag.

It was dinner time when we arrived in infusion.  Many of the patients were eating and the place was filled with smells. Not good.  Get's better when we get back to our cubby and are waiting and our new nurse does not even introduce herself.  Then I catch her energy/style with other patients and know that this will not be a good match for the evening.

So, up to the front to find someone I know to get a different nurse.  Nobody I know is there except the desk nurse, so I talk to her.  She asks me to wait, I go into the waiting room and Laura joins me.  Then the nurse I had been assigned shows up with another nurse to find out what the problem was.  Only thing is they were cornering me into a room and I pushed back right away.  Asked them to back off, Laura did too.  Explained that I wouldn't work with someone who did not even introduce herself.  Kept my temper, released a lot of power however.

The nurse in charge was waiting, she was very energetically aware, kept her energy in her spine and back, so she wasn't pushing at me and was very clear and helpful.  She changed me to another area, got me a nurse I was familiar with and got everything started.

Only issue, some of the pre-meds were incorrect, thankfully Laura was able to track all those details, they were about to give me Aloxi, proven to cause me migraines, again.

I got really nauseous during the infusion, mostly because I was exhausted and hungry and my adrenals had been running on overload for hours.  We tried for oatmeal, not available, finally a tech went to the kitchen and made me some grits, he was an angel.

And, during the infusion, the first signs of peripheral neuropathy arrived in my left hand then my right. This has been the major concern about this drug, I am being very proactive on treatment, however to feel nerve damage almost immediately upon receiving the drug, that really floored me.

So, I made it through, Laura did too.  I got my infusion of Taxol, and I have three more.  The side affects over the next week were pretty nasty and all the parts of the infusion day were such a journey, it has really taken time for me to process it all out.

Where are we now?

I return, (three week interval) next Wednesday.  Thanksgiving is going to be a non-event this year.  We have a great Cedar Run Farms turkey coming, which we will cook and use to make a lot of soup next weekend.

This week is my first week off in a long time.  I am not recovering or going to treatment, and I am not recovering from a surgery.  Whew.

This morning I am missing my beloved Education for Ministry class because Sarah is home with a tummy ache, so I am blogging and watching the ducks on the river.

Love to you all,
Amelia

Tuesday, November 1, 2011

A Few Things it is Helpful to Accept About Life

Dear Ones,

Recently a friend introduced me to a friend of hers, and her blog. Bonnie Gintis D.O. (Doctor of Osteopathic Medicine) has been walking a similar path to mine.  While I haven't had a chance to read everything, I do want to share Bonnie's words.  Reading this over this morning has allowed me to again clarify and expand my own truths and knowings. So, to Bonnie first:

Bonnie Gintis Health Update

The Cancer "Brouhaha" & Gratitude (Not Necessarily Connected)

"It's shocking when someone you know is diagnosed with cancer. It's even more frightful when that person is one of the healthiest people you know. What could be more distressing than a cancer diagnosis in someone who is considered an expert in sensing and perceiving the structure and function of the body? How does a person cope with learning that one of the people on whom they rely for reassurance about their health has gotten cancer themselves?

"There is no way to make sense of this situation, so let's not waste precious life energy thinking we can figure this out or draw any conclusions.


"I find it helpful to accept a few things about life:
Life is not fair. It doesn't always make sense.
Cause and effect is not only not obvious; it frequently doesn't exist.
There is no such thing as life without problems.
No one is perfect or immune from misfortune.
Assigning blame does not help.
There's no cosmic meaning inherent in being given a "life lesson" like cancer.
The only meaning I care about is the one I create. (This is not the same as "positive thinking." I'll say more about this in a future entry.)
At this point, why or how I got this cancer is unknowable.
What really matters is how I meet it now that it's here."
she continues here.
a beautiful foundation
Reading Bonnie's words helps reminded me about these things, to remember that it really is all about how I meet what I find in my lap.

For me, in this moment, it all distills down to this spiritual truth:

Our experiences bring us forward, to somewhere new that we often cannot imagine.  Spirit is taking us to a new level, preparing us for an expansion. Pain, misfortune, illness, challenges and grief all grow us into new people.  It is our choice how to respond to any situation, our choice to find the peace and love and lessons, our opportunity to allow ourselves to be molded and transformed through the love of Spirit.

With this, I continue to call myself forward into this process, with the prayer and the hope that I can hear and respond for the highest and best.  And with the trust that Spirit is incredibly patient, and she will love and support me, even if I stumble and doubt and fuss some days.

Blessings all,
~Amelia