What, Really?

Dear Ones,

I am appalled.

My first chemotherapy bill has arrived.





Yes, I am insured.

And the system is broken. A village could be fed and have clean water for what my insurance will pay for a single chemo treatment for a middle class white woman in America.

I am so grateful for the gift of my abundance and I simply don't believe that the drugs I have received - that are old standards - actually need to cost so much.

After appalled, I find that I am sad.

Much love,
Amelia

ps: the second round was more gentle, with the dose reduction - I am feeling human seven days out, the last time I was at the ER Tuesday night.

Chemo-Cleanse 2 Day 2

Dear Ones,

Yesterday went well. The docs listened and heard us. I feel far more understood and taken care of. They felt a 25% reduction of the chemo-cleanse adriamycin and cytoxan was warranted, as well as some modifications to the pre-meds for nausea prevention.

So, the infusion went well, too. Claire was my nurse again, which felt very good, and I got more support and advice on how to manage this experience. We even went into the same semi-private room, since to window view was far too bright for my eyes.

Laura had asked Deb, our Nurse Practitioner, during our appointment if getting fluids this morning was an option, and it was agreed upon immediately, so that is where I am now. Back in the infusion center for a liter of saline and breakfast. Laura went down to the cafeteria and brought up breakfast; omelets and gluten- free toast. Thankfully, this time I was able to eat breakfast.

I don't feel great, low energy and the headache and nausea are lurking in the background. It seems that the slightest stimuli encourages these opportunistic gremlins to leap into action, so prevention seems to be the most important skill-set to develop.




I send you all saline drip
greetings and a gentle hug. My prayer for the next few days is for a gentle recovery that my body is able to manage gracefully. I hope I'll be up to small walks and sitting outside. We are planning a return visit to Longwood Gardens on our way home today.

Much love,
Amelia

These Curly Locks

Dear Ones,

When I wrote a couple of weeks ago about letting go of my hair, a good friend who has walked a similar journey, shared this poem with me.  My own long strands of silky threads are coming loose from their anchors and will soon be gone.  This poem speaks to me; it makes me smile and it helps me let go just a little bit more easily.

I realized what was happening as I ran my fingers through my hair yesterday in the car.  Sarah was with me and declared the handful of loose golden threads weird.  It is weird, yet it was also expected to happen at some point in the next few weeks.  My plan is to buzz my hair off some day very soon, so that I don't end up with an odd mullet or other peculiarity that would probably not actually be funny right now.  Once a Leo, always a Leo.

With that said, the buzz will be a sacred moment that is shared with Laura and a close friend.  I will save my hair, so that it can line the nests of birds as spring arrives next year.

Love and Blessings to you all,
~Amelia

FAREWELL TO HAIR by Terri Hanson

I stood outside on a windy day
and ran my fingers through my hair.
Long strands of silky threads
blew across the lawn.
They glistened in the sun,
too many to count.

I imagined a nest,
lined with my mane,
woven by a mama bird.
The babies nestled,
snug inside,
warmed by my fallen tresses.

Now on the wintry nights,
when my head is cold,
I pull my wool cap
over my ears and smile
as I dream of baby birds
sleeping in my hair.

Chemo Cleanse - Week One

Dear Ones,

Thank you for your love and prayers this past week.  It has been a week unlike any I have every experienced or imagined.  If you can hang in with the story, please do.

Short story, my body did not handle the (unexpectedly large) dose of chemotherapy drugs well.  In fact, it made me quite sick, painful GI issues, dehydration, migraine, edge of nausea, exhaustion, emotionally torn apart, and oh... I couldn't catch my breath after walking up one flight of stairs.  And my issues started on day two, which should have been a big tip off, since I was told days 3-5 were the times of concern, and issues continue still a week out.  Oh, and there was that ER visit on Tuesday.

The long story.
On Thursday morning, I remember lying in bed for about 45 minutes trying to figure out the timing of Zofran for nausea.  Basically, the math problem was, if I take this at 8am, and I take it every eight hours, what times would I take it later?  This took me from about 6:15am to 7am to figure out.  At which point I had was able to convert the answer to an hour earlier and just take the pill at 7am, 3pm and 11pm.  (just so you know I did figure it out)

Thursday, headache getting light sensitive and breakthrough nausea that was managed with lots of ginger.  We drove home from Philadelphia with a very healing and lovely stop at Longwood Gardens.  I sure wasn't my normal self, but I pulled through and enjoyed the waterlilies especially.

Friday, yuk, GI pain started, nausea in background, headache became very light sensitive migraine. Finding food I could eat became a problem, yet I discovered if I didn't eat a bit of something, the low blood sugar crash was even more miserable.  Saturday, the same.  I was simply miserable, and we kept trying to explain it away, this is just chemo, I am pretty conscious of my body - so more sensitive and aware, and even the classic Yankee "Buck Up" was running through my head by then.  From someone whose practice has been to be gentle and loving and I was fussing and telling myself to get over it.  That didn't work so well.

Sunday, a healing session with a very skilled Shaman.  Thankfully.  Spirit got me there on a wing and a prayer by whispering different stories in my head that resulted in me being just down the street from Sandy's temp. office and realizing that I could go to my scheduled appointment in person.  Wow.

At that point I got my head back connected enough to quiet so many of the stories and feelings that were running amok.  And my body got soothed enough to come down off of high alert.  Later that evening Laura and I took a walk, and I discovered that I was completely winded three houses down, and simply couldn't get my breath as we walked back.  That was worrisome.  Nobody said anything about lung concerns.

My brain had also registered some of the information that our (angel) nurse had provided us after the infusion on Wednesday (She said she usually didn't write all the details down, but I might need them.) The dosage of the medications Adriamycin and Cytoxan kept coming back to me, and I realized that I had received far higher doses than we expected.  That freaked me out, a lot.

Did I mention the heat of the headache and the flush?  I felt like I was burning up, like my brain was crispy, my eyes hurt, and much of my body was hot and flushed, no fever though.  Ice cold water, lots of air conditioning - were the only way too make me comfortable, sort of.

And hey- this was consistent with my understanding that this was going to be a burning off of what I no longer need.  Here it was, heart burn, belly burn, lung burn, head burn, eye burn... 

So Laura and I continued to make it ok and soothe the symptoms.  Except I was now mad about the dosage.  And feeling betrayed by my doctors.  And mad.  And sad.  Let me say more about Laura.  She has been at my side through all of this, doing her best to help me be comfortable and well taken care of. 

We had gotten lots of lists of what to call about - all of my symptoms were just below the call/emergency threshold, but I had symptoms from every section of the list???  They worked so hard to not create side effects by suggestion, and downplay them if they happen, we simply didn't have the information to know that what was going on was way over the top and not at all expected for a first round of chemo.

So yeah, we started calling and asking for advice.  It took a couple of rounds.  Finally I really pushed it on the lung pain and shortness of breath and they wanted me at the emergency room right away for a chest x-ray, and fluids and something for my belly and headache.  This was Tuesday, mid-day.  I knew I needed to go, because I needed fluids and I was concerned about breathing; I find it quite vital to life. Laura was not happy, taking an immune-suppressed wife to the ER was not her favorite plan.

The other reason I went was to be compliant patient.  I am going to be pushing pretty hard back at my doctors next week when I go for my scheduled second round.  I have done what they asked, and got the medical treatment.

Now, the ER, another real challenge.  An hour to be seen, three 'til the IV was actually running saline.  Laura was great. Sister-in-law Cara is a nurse, and she had made it clear to Laura that if you are ever in the hosptial, ER esp, you must be the squeaky wheel.  Everyone is busy and unless you keep pushing and asking and being annoying, you will simply be at the end of the line.  Laura was able to do this; I had no push in me.  Note to all - bring a pushy advocate to the ER if you ever must go!

So, a couple of EKGs, blood work and a CT scan turned up nothing.  I did not have a pulmonary embolism, blood work including cardiac enzymes was all good.  The doc wanted to keep me overnight for observation and a echocardiogram in the morning (I am so jaded, I read that as profit not need).  I talked her out of that with some negotiation.  I wanted home, I needed real sleep, I didn't need to catch anything thank you kindly.  We were there for 7 1/2 hours total.  Thank you to dear friends Kat and Jerry who got Sarah from school, entertained, fed and looked after her all evening.  And Kevin of course too - as she ended up having to go home with him, as we didn't get home til after 11pm.

This is a long and rambling narrative.  I have so wanted to be able to write sooner and share what was going on, and I simply have not been able to sit up at the computer and type.  Thanks for hanging in with me on all of it.

So, where are we now?

I am scheduled to see my doctor's assistant next Wednesday before the next infusion.  I have made a lot of noise about how we must discuss dosage.  There will be more noise before Wednesday.

Because this is the deal.  Adriamycin is very toxic for the heart.  There are known lifetime maximum cumulative dosages. When combined with Cytoxan, that lifetime dose is 450mg.  We were educated about this at CTCA and told that total cumulative of my doses would not exceed 200mg, because that is a level believed to be safe for the heart.  I received 95mg last Wednesday, and that was the first of four infusions of this drug combo.  So at those levels I would be getting 380mg.

380mg is not acceptable.  Not to mention the massive dose of Cytoxan I got with it too.

I'm frustrated, mostly because we spent so much time thinking I was being listened too.  We are up at CTCA because they have a reputation for combining all of the holistic parts into the care and spending enough time to get to know people.  We thought that was happening, and were mistaken.  We didn't check dosage on Wednesday, we had been so educated about the risks, it didn't occur to me that I received almost a double dose.  And my system is extra sensitive, I take half doses of things, so it isn't surprising that I had such a miserable experience.

So, I am working on the next steps.  A big conversation with my doc and a drastic change in dosage is required. I am holding that I will be heard and this change can be effected, allowing me to move through this process more gently.

And to all those dear friends who want to help fix this for me.  Thank you.  Please simply sit with me in the trust that I have what I need, this experience was somehow mine/ours to have, and it is taking me somewhere.  There are many other doctors, I have connections to quite a few, and will go that route if it is necessary.  Trust that Laura and I will navigate this and figure it out.  If I need help in that regard, I will ask.

What I can use, prayer that I am heard and seen and get what I need and your understanding that I have been utterly unable to keep in touch with people and check in. I continue to appreciate the help of those who can give Sarah rides and time when I am able and all of you who check in, sending love and prayer.

And send love and understanding to all involved with my care.  I am not typical, I know that. 

with love,
~Amelia

So this morning ...

Dear Ones,

The moon was full and golden, and she kept me company as I ate an early morning snack that I have found calms the burning pain I feel when hungry.

I slept again, and when I woke the ducks were all outside the window. When I came closer to see, I discovered there were two does in the yard visiting also. As Laura and I watched, hummingbird arrived.

Downstairs again, and there is kingfisher, on the dock next door, paying us our first visit of the year.

I need to lean into trusting the presence of these guests and guides. My felt sense is overwhelmed by sensations that range from unpleasant to downright miserable. Meanwhile the demons that say don't trust, it's not safe, you are alone and you're not worthy have been stirred and boiled into action.

Round one, day six...

With prayers that I can feel and trust the love that fully surrounds me,

~Amelia

Hummingbird on feeder drinking deeply.

Worry in the Night

Dear Ones,

For some inexplicable reason, I woke repeatedly last night and found that in those dark moments my mind easily found things to fuss and worry about. I know about worry. It is about fear and lack and it makes me miserable. I recognize it pretty quickly these days and know I want to get it transformed into another way of thinking.  Promptly.

For me, a favorite concept is that what I put my focus on grows. From this point of view - worry is essentially prayer in reverse. Or more simply, I am focusing on what I don't want instead of what I do want.

I believe our prayers are heard and answered, although Spirit is not literal and does not grant wishes like a genie in a bottle. I also believe that at all times, Spirit sees me, and us all, at our highest and best and brings me gifts and experiences that will allow me to grow and further master my time here in earth school.

So when I start down the worry path, it feels like there is far less light and space for me to see possibilities and imagine a different outcome. When worry grabs me, I am like a dog chasing her tail, round and round we go. These worry circles can become spirals, which dive deeply into fear and dark imaginings.

That fear is paralyzing. Fear can be terrifying. And this is where worry goes... Diving deeper and deeper into the unknown, picking up other triggers and bits on the way down.

Yet, worry is simply prayer in reverse. Thinking and focusing on what I don't want instead of what I do.

To bring myself back from worry and fear, I need a way to turn my thoughts around. Since I am not always so good at "Pollyanna," I can't always just shift to positive and good intentioned thought. Sometimes it is really hard to get out of the worry rut as fear grabs my hand in the dark.

What I have learned that I can do though is to preface my worry thoughts.

"Blessed Spirit please help me with... "

"Dear God I need your help as I figure out all the logistics of taking care of Sarah when I am in treatment."

"Angels, walk beside me and guide me as I step into the unknowns of my chemo-cleanse."

When I ask for help, the night lightens and my body softens. Last night must have been a quiz or something, since I got to practice this over and over.

Often it takes a few circles and loops before I realize that how I am thinking is making me miserable - that is when I come just slightly back to consciousness and can ask for help.

Any worry can have "God, Spirit, All, please help me with..." added to the front of it.

This is one of my lessons. I get to continue to remember to ask for this help.

Tonight, I ask the Blessed Goddess who watches over me to help me to remember that I can turn my worries into prayers. Let my concerns create prayers and new ways of thinking and feeling.

And Dear Goddess Spirit, let this week be gentle, see to it that Sarah is well cared for, that Laura has all that she needs as she cares for me and herself and that my body be strong and able to handle the tests and chemo-cleanse with ease.

Thanks be to All,
Amelia