Nuestra Senora de Guadalupe

Things We Need

Since my current adventure started I have been wearing a necklace given to me by a family member years ago, it's a pendant of Our Lady of Guadalupe.   I think all Chamorro's are Catholic.   : )   My aunt said:  "Whatever you believe in, Mary is always your mother."  The back says "Pray For Us."  It's silver with an aged patina, the picture does not do it justice.  I wear it everyday.

You know no one... including the Spanish... knows how "Guadalupe" got attached to this icon exactly... a mystery for another time. 

I was reading on Anne Lamott's FB page about how she always wears a Miraculous Mary on a chain along with another pendant that says "God's got it" and so feels semi-okay most of the time.  

I feel much the same.  There is comfort in something so small.  It's a little inexplicable but true nonetheless.  A family thing, a spiritual thing, something tangible to touch when needed to remind you, yes, you're still here and it's okay.  I am comfort.

This last chemo has kicked my ass, and yes, I'm sure further down the road new heights will be hit with this.  Though I haven't... and that's something to be said, all I want to do is vomit.  What little energy is there is spent on NOT vomiting.  It's a delicate balance.   You can never tell what's going to set it off.  A scent, a food, the refrigerator, the cat food, someone else' lunch at work, a perfume, holding too much fluid in your mouth when you're brushing your teeth, someone's breath, their scent, a car, outdoors, indoors.  Get the drift?

And then there's the fatigue.  All I want to do is sleep, including while driving.  Okay, we won't go into that, I carry apples and/or carrots to help keep me awake.  It's the only thing that works.  BUT... all I want to do is sleep.  What?!  I have to drag by butt across the room???  Noooooo!  I don't feel like chatting on the phone.  I don't feel like doing anything at all.  I'm barely coping right now with myself.  I'm hoping to feel better soon, the week following chemo... not good.  I did manage to get a good amount of food in me today at lunch, and felt the boost from that.  Auspicious sign.  Nutrition works!

I am hopeful for next week.  Things should be tasting better, going down easier, and I should be feeling better.  I plan to sleep this weekend.  

I've got Mary on my side.

It's here...

The last 4 days or so there is an increase in hair loss.  I sit in my room in the mornings to put my face on and oh... dropping some eyebrow... or sprinkle of eyelash (I make sure I wear mascara so I'm not getting any lashes dumped in my eyes during the course of the day).  What am I going to do with no lashes???  I get stuff in my eyes all the time as it is, especially cat fur!  Anyway, the last 3 days brought a new phenomenon... scalp pain.  Needles in my scalp!  I came home today and did a little Googling... I LOVE Google.

More tears... My. God.  So much info on this subject... so, so many women experiencing this.  Makes your heart hurt.  I feel their pain.

I did learn some things.  I also learned Turneric is not good during chemo, it blocks something or other and interacts with the chemo itself

... need to do more research on this.

Back to the lack of eyelashes... maybe I should just do glasses to help protect my eyes and focus on lips?  I still have pretty full lips... votes?  Red lips, burgundy lips, brownish lips, something that says "look at me, look at me!"  Well, no... I don't have to get all that crazy... but you get the drift.  Meanwhile, I'll just live with the scalp thing, not much choice there... and hope it goes away... soon.

Nam-myoho-renge-kyo.  Trying to bring in the Mystic Law of the Universe!  Can't hurt.

Stuff & Nonsense

A Tiny Ode to Tami

In the early 2000's I really loved the daily inspirational quotes from Mary Manning Morrissey.  For the most part they really spoke to me.  One of my favorites that I have shared with coworkers is the one about how St. John of the Cross coined the phrase "the dark night of the soul," it's a book in fact.  It was about that in-between space where your old life doesn't work anymore and you haven't quite moved into the new one.  I always thought that so a propos for folks newly in recovery, trying to find their feet in a new reality.   Oh, and hello?  That's where I am right now.  Trying to find my feet.

I went to get my head shaved and my hairdresser Tami (not sure how she spells her name!) greeted me with a hug.  I sat in the chair and she got the clippers out.  "Wait!  No cutting it short first???  You just start clipping???"  Apparently you do.  It was a little like the scene in GI Jane.  Tami had never seen that movie but she probably will now.  She said I had a nice round head.  And yes, it felt good to feel my scalp in this new way.  I put a temporary wig on that I had, it looked horrible but would get me home.  We got up to the counter and though I was prepared to pay she smiled and backed up and said no, she couldn't take any money.  I fussed with her a little, and she was so sweet not allowing me to pay her anything.  We hugged again, she gave me her email to keep in touch and I was off.  It will be a least a year and a half before I see her again.  I cried all the way home.

I've been crying ever since... in between distractions.

I had a sore throat on Friday, it had been sneaking up for a couple of days and presented itself in full force.  I still had to go see the oncologist regardless for blood work.  And the good news is (despite my reality) the blood work came back favorable, meaning, I was a little anemic, and a little something else, but overall, it didn't destroy me!  Yay!  I get to continue!  She gave me gold stars for tolerating the chemo!  Except... why... well I had a lot of questions, the biggest was how do you measure progress?  Do you just do a known chemo plan based on past successes and hope for the best, or is there a way of knowing.  I have friends to have 3, 5, 10 year checkups who say they passed and are cancer free, how do they know?  Answer:  There is no way of knowing really.  So, unless a problem arises that indicates something is going on you just hang onto that hope.

Alrighty then.

My eyesight has gone south, reading, and computer vision.  She said that was probably because of the steroid (and emotionality too, I'm sure).  You get lots of meds with your chemo, and that's probably a good thing.  I've essentially never had heartburn in my life, I do now, so I get a pill for that too.  I did find out the chemo is out of the body within the first 48+ hours.  Really?  It's the effect of that chemo that's so long standing.  I'm always queasy.  Always.  Erin, thank you, the Queasy Drops work!  I think the Ginger Gum works so well because it's so hot in my mouth it distracts me.

My port (this picture is from this morning) still hurts a little, is tender, and you can still see the bruising.

Had my first lone grocery store adventure on Saturday, David is at a conference.  There I was in the baking isle when suddenly I got hot (threw my

sweater off), then a cold sweat, panting for air and this sudden extreme fatigue came over me, like I couldn't lift a finger.  After the worst part of it ebbed I checked out to go home.  Ate, drank some fluids, rested and went out to do Os' shopping.

Have I ever mentioned I have a 15 lb Norwegian Forest Cat with an eating disorder?

I do.  Mama has not been feeling good so I've been lazy and giving him a lot of crunchy food, good crunchy food, but I'm usually a good mama and feed him wet food (human grade good food).  I decided I needed to put him back on his wet food diet and he will have nothing to do with that.  No, I won't eat.  So I get him this new food that's specifically for finicky eaters and he stands 4 feet from it and sniffs the air... and walks away.  Okay, he hasn't eaten in 24 hours so I go get a spoon to feed him that way... to get him started... and look back... he's eating.  A little.  Okay, licking.  We're having the same struggle today.  He's worse than a teenage girl.  I see feeding him in my immediate future.  I get zero breaks from this cat.  He's so freakin' gorgeous that in the midst of frustration he's so dang endearing.

Life goes on right?  I'm taking one day at a time, sometimes one moment at a time.  I'm getting a crash course in a new life and it moves faster than my usual slow pace.  I love slow, I have a deep appreciation for slow.  Hard to keep up, you know?

Chemo & Port

Cornbread Tastes Like Cornbread  

My chemotherapy started Friday October 3rd.  My doctor saw me for a few minutes beforehand and informed she had some of the biopsies retested from the surgery.  Rather than being a rare case enigma, what she suspected was now true, I have two separate cancers occurring in my right breast.  One is the slow growing tumor that was removed and the other a wildly aggressive cancer that took over all my nodes and breast tissue.  Well, how 'bout that?!  This will mean an additional chemo drug, Herceptin, that I will be on for a year.  I'm just, you know, going with the flow... "like water off a spinning ball..."

My port was not in yet but they wanted to get the show on the road... me too... so they set me up in this nice suite, in a comfy reclining chair, and I had my friend Abigail with me for this first visit.  We watched other folks come and go.  First the infusion of saline- 30 min, a steroid- 30 min, anti nausea- 20 min, Adriamycin- 30 min, Cytoxin- 1 hour, saline again 20 min.  Abigail and I chatted off and on throughout.  I went to the bathroom (only for toxic avengers) which was a beautiful sunny bathroom and noted a mosquito flying around and landing on the wall.  I smiled.  When I walked out I said there a mosquito in there... a really stupid one!

I did fairly fine, noticed my tastebuds going off relatively quickly, mild nausea only that night.  Saturday, and already the "tireds" were kicking in.  A little more nausea but had meds for that, not too bad.  Sunday very tired.  Really didn't do much and doc said to take it easy this weekend.  

Never, ever, ever get your port in after you start chemo!!!  Big tip here!

The Port   

A port is a device for easy entry into a big vein for chemo or to draw blood.  It's placed under the skin on your chest.   So when you go for your appointment they just hook in and do everything from this one port.  Spares wear and tear on your veins.

Monday was port day at the hospital outpatient surgery.  So... okay, when you're dealing with nausea it is not a good idea to go without food or water!  Or, have a surgery!  I started retching and vomiting on the surgery table, they were trying to get IV meds in me as fast as possible, but nope!  I am the queen of vomit!  Actually, retching since there was nothing coming up.  It was cool, the surgeon was waiting patiently for me.  After the port went in and surgery done I was parked in the hall vomiting, er, retching again, over and over.  Finally they got it under control, good thing too because I had maxed out the medication.

David finally found me so we could go home and I slept, and slept, and slept...

It's now 3:35 on Tuesday and I'm just starting to feel semi-normal, and conscious.  My eyes have not wanted to focus much, at least for reading up to this point.  I went to the grocery store earlier, and that was an assault on all of my senses.  

Everything tastes so, so weird.  Indescribable.  Protein is important but the very least thing I'm interested in.  I go with whatever I can get down at the time.  Thank you to all my Facebook friends for you input, strength, and wisdom during this very trying time of mine!  It's all appreciated!  For my sister, I love you!  Finally David, who makes it all a little more bearable.