Happy Halloween

Yesterday in Thomas Point Park

Dear Ones,

I know when Halloween became important to us in recent years.  Sarah's attendance at Key School has made it so. 

I tell the story that this is because it isn't politically correct to celebrate any of the religious holidays.  So we are left with a few lovely pagan celebrations like Halloween that schools can have fun with, and Key School does that with aplomb.  A parade takes place each year with all the students, from Pre-K 3's to High School Seniors.  This is a sophisticated group, there are often some wonderful costumes, full of humor, intelligence and creativity.

Since I plan to take you through all the years, I will step back to Sarah's years before Key:

Flower Fairy ages 2-3

Flower Fairy of her own design age 4

We started out with Sarah in Kindergarten, with a simple and lovely mod pink kitty cat.

Kindergarten - Age 5

 First Grade - things amped up a bit, engineering was involved (thanks Dad) and the Snail arrived:

Sarah aged 6, First grade

Key Parade

 And on we go:

Flying Squirrel - Second Grade

Age 7

Medusa - Third Grade

Age 8

Luna Moth - Forth Grade

Age 9

Native American - Fifth Grade

Age 10 - With Harley Dee at TLC

Our Squid - grumpy -Sixth Grade

 

A bit more cheerful at parade. Age 11

Age 11 again - Sarah and Becky with The Wilf at TLC as Lion Tamers - they made the costumes:-)

Much love to you all, and thank you for allowing me to indulge in some Mama-Love, Mama-Proud memory moments.  And yes, Sarah thought up all of these costumes herself.

Happy Halloween,
Happy Harvest,
Happy All Saints Day,
and a blessed coming to rest for the earth as the seasons change.
~Amelia

On Being Bald

Dear Ones,

So, it isn't exactly like I thought it would be, it is sort of odd actually, this lack of hair thing.

It was coming out in bunches, only saved from appearing too thin by my curls, and it needed to go. This is one of those big things for those in cancer treatment - the hair. For me, it was what will I actually look like bald? How is my head shaped? Will I look really sick?

So, I did it, as I have written, we cut my hair off and the buzzed it. My scalp was happier - it literally was burning from the pull of the hair on the follicles.

I didn't anticipate the ice cream headaches though. Wow, cold is painful.

Or the fact that I can now shop in peace in so many stores. The sales people just leave me alone.

I didn't know that my head was beautiful, and my eyes are so big and green.

And I wasn't aware of how I could surprise myself with a quick glance in the mirror when I am not wearing a hat or scarf.

The steadiness of my dear Sarah has impressed me, she continues to assert that "it isn't a good look for me" but she hasn't been bothered or squeamish about bald Mama a bit.  She was quite helpful the other evening as I looked at hat options, vetoing the vast majority.  As she finished up and prepared for bed she commented, "My work here is done."

Laura, my beloved, simply tells me how beautiful I am and likes to rub the fuzz on my head.

That's the other thing, I have fuzz.... If I want to be shiny bald, I need to shave. That will probably change as I go further into chemo and change drugs. For now though, the fuzz is a color that is more indicative of my age than anything else. I find that bothers me and makes me sad sometimes.

I am quickly expanding my hat and scarf wardrobe. I like to match. The chemo-cleanse heats up my body, so I go from lovely with multiple hats to steaming and pulling off said hats, only in private so far, quite unexpectedly.

What I am finding frustrating this week is that hair matches all of one's outfits.  Hats and scarves do not, matching can be really frustrating some mornings, and running around looking like a crazed fortune teller is not my preferred persona.

I'm curious about running around bald, and it isn't really warm enough anymore. We'll see how I do there, how about I start here.

I have a beautiful wig. It needs trimming and steaming, and it is too hot, and I am cranky about it. So I put on my wool hats and scarves and keep trying to remember to call my hairstylist to get her to fix it.

Bald is truly an opportunity to let go of so many attachments and ideas. As long as I allow the moments of grief and sadness, fear and loss in, too.

Blessings to you all, with all your fabulous hair! Enjoy it!

Amelia

Synapses are Challenged

Dear Ones,

Yes, perhaps that is a good place to open this long past due blog entry. Synapse challenged is how I am feeling these days. That and a whole lot of other things too. And I will stick with that sensation for a moment. Basically there is a period of time after chemo-cleanse where my brain just goes foggy and as limp as an overcooked brown rice noodle at the slightest provocation.

I feel as if I have succumbed to this sensation and experience over and over for the past few weeks, and it is a bit crazy making. So the chemo-brain sensation is real.

This morning (well, afternoon at the moment) I am trying to push back a bit and write, at the moment I feel somewhat clear, and hope that translates.

The last five/six weeks have been like nothing I have ever imagined, and much of the time I have simply been in survival/function mode. This leaves me feeling pretty lost at times, as it is hard to connect with the world when my brain is so foggy. Thankfully Laura and Sarah are pretty good at connecting with me as are a few close friends.

My big full life, is now a small surviving life. I never know from moment to moment what I will feel like, which makes planning a beast. Some moments are delightful and open and my brain is plugged in and happy. I can move and talk and enjoy. Some times, I just move my head and get nauseous, or a smell will waft by and darn near double me over. Please note though, I am tolerating the new dosage of chemo-cleanse drugs "well," and my nausea is not nearly as bad as it could be. So that is something to be grateful for.

We are better at anticipating the rhythm of chemo-cleanse now that I have had three infusions. This is what it looks like.

Day One - Wednesday
Drive to CTCA, port access, blood work, meet with people, busy day until we get to the infusion center late afternoon. Claire has been my nurse, thankfully. And the infusion itself is relatively uneventful. Well, except for the dancing feet from the steroids. The day is filled with an anticipatory dread that I can work around; I can't say that I have fully gotten past though. We get back to the hotel after dinner and rest. Just writing about it makes me feel blah.

Day Two - Thursday
Back to CTCA for a morning saline drip. My body really appreciates the extra hydration. We have also learned that I don't fare well with the new anti-nausea drugs, so am on the older, drowsy-making kinds. Day two is this odd, twilight zone kind of day. My body is aware that it has received a really heavy dose of drugs and wants them out, however the heavy post chemo feeling hasn't arrived yet, so I feel generally ok. To take advantage of this, Laura and I have taken delightful field trips on the way home. We've been to Longwood Gardens and Winterthur and look forward to visiting both repeatedly. It let's me get outside and walk a bit, with lots of benches, and we get to see beautiful things. With the holidays coming, they are sure to get prettier and prettier, and I really need something to look forward to on these trips. We are now members of Longwood and Winterthur will have us too, soon enough.

Day Three - Friday
Ugh... That is how I usually wake. I feel just gross. Nausea in the background, all the sensitivities, my tummy hurts, and there is a threatened headache if not an actual one. The new drugs that make me drowsy aren't too bad, I can sleep on and off and rest a lot. Eating becomes an art, finding the right foods and getting fluids into me is a challenge that Laura has cheerfully, or determinedly, faced over and over. If I don't eat, my blood sugar crashes, not good. If I eat the wrong foods, miserable tummy. If I don't stay hydrated, body not happy. I usually get in the tub with a bunch of Epsom salts at some point, and we try to get a walk in to help cleanse and clear. I say this on day six, on days three to five I can be oh, just a bit cranky about all such things that are good for me.

Day Four - Saturday
Is a lot like Friday, only it is the weekend now, and there is this sense we are missing things that we would enjoy doing. Laura has arranged her schedule so that she is off from Wednesday through Sunday with me during this time. We get a lot of good time together and have found we can read to each other, take small walks and often do a bit of shopping together. The farmers' market is usually possible, although this week we made a run up to Laura's apartment for our grand excursion of the weekend.

Day Five - Sunday
By now I am off the anti-nausea drugs and a bit less groggy. Last night I was able to make much of our dinner and I worked on a felting project, 'cept that the final touches require some sort of brain creativity and that isn't showing up as yet. We stayed up too late reading last night, and I had some more very odd dreams. It seems that the high dose melatonin combined with the drugs creates a wild dreamscape. It would take the whole day to just record and process most of them, so I just allow dream time to be and don't work to hard to interpret or understand.

And today is day six. That means the worst of the post-infusion stuff should be over now. The actual side effects of the chemo-cleanse are slower to arrive and cumulative. These days it is the belly ache, hair gone, tiredness that is most noticeable - and who knows what else will arrive over time.

I find that It is difficult to keep in touch with people, more so than I imagined it would be. Even though it seems like I have all this free time, my ability to put it to use in a way that feels productive is highly limited.

My house project is still chugging along trying to actually get started, and I had to tell the architect and contractors that they needed to initiate contact and keep in touch with me. The simple act of initiating action is often beyond me. So I am now telling all of you the same thing. It is really hard for me to make stuff happen, and for a highly productive person
this is downright strange and frustrating, so check in if it feels right; I may not initiate as  much 'til chemo-cleanse and radiation are over next year.

And in closing, let me remind myself and everyone else, why I am doing this. I was diagnosed with stage two locally metastatic breast cancer. It had not spread out of the breast, however the spread is the concern, thus chemo-cleanse to treat my body systemically. I have to come back to why I chose this occasionally - we ran the statistics - they do improve markedly with this regimen. I am choosing to do this. I want to live for a good long time.

I will sign off with another reminder, to myself, that I hope someday, sooner rather than later, to begin to see the wisdoms, learnings, or the where I am going from this... For that I pray.

Much love to you all,
Amelia

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