Steroids

It has been over a year since I had to take steroids in any form other than IV.   Last week I stared a new regime for my chemo.  I have spent months feeling like I was just treading water...not actively battling the cancer...just holding up my arms keeping it at bay.  This new regime is me actively battling that cancer.  I am back on the front lone treatment so I am back on oral steroids.  Day before, day of,  and day after treatment...I get to take 8mg of dexamethasone 2x a day.  Let me just say I HATE steroids.  They upset my stomach....I've been told that they can't upset my stomach...because I am taking them to control nausea...but the steroids stop the crappy stomach feeling goes with it.  They also make me hungry as hell.   I mean constantly eating for 3 days hungry.  Funny thing is...I feel good to be back on the front line.  This way when my daughter asks if I'm terminal...and I have to say yes...I can ad that I doing EVERYTHING I can do to kick cancers ass!  When she sets a goal for me to still be around to see her first baby graduate from kindergarten, I can tell her that I will do my best and mean it.  I may have to feel crummy because I the drugs...I may have to feel crummy because of the steroids...I may gain in fat the 40 pounds of fluid I have managed to get rid of because of the eating...but I am actively fighting.
That's all...I'm back..and I'm fighting,
To the moon and back,
Sarah

Long Time no Type!

It turns out having chemo only once a month makes my life so much better.  I actually have energy.  I get out of bed.  I can breath easier.  I can be an effective mother who is actually on the clue bus.  The last one is the most valuable to me.  It feels somewhat foreign to be able to weigh in with a decent opinion when our teen gets a little rowdy.  I'll be honest I do still get cross more quickly than before.  I'm working on that.  It isn't her fault that chemo still makes me extra tired in the afternoons.  It isn't her fault that she doesn't talk as fast as I do (or as fast as her Mimi does)...so I need to practice listening to stories told slowly.  I need not to get exasperated if she starts telling a story in the middle of my favorite show (isn't that why there is a pause button).  So there it is...new chemo has lifted my quality of life to a place I have not seen in a very long time.  Oh I forgot to tell you....the chemo is Doxil...I was terrified of this drug for over 2 years.  If i was given a choice Doxil was always on the list and I ALWAYS chose something else.  I started this drug...I had one treatment (it did nothing...but allow my CA-125 to go up)...I had the second treatment (it started to work...like I said above... energy ... breathing ... mothering ... it all got a little bit better), so Doxil isn't all that bad...actually it is a little bit amazing.  So with my CA dropping...I am off to Austin this weekend.

To the and back my lovelies,
Sarah

here are some pics just for fun

I can open my mouth way bigger 
than you.....AHHHHHHHHHHH!

my precious pup looking so regal!

Robin signing autographs for her adoring 
public (or adoring aunts and cousins)

the pulse ox reader made my 
finger a little bit SAD.

new hats from Texas Oncology...I 
love that my lips match the hat.

Binoculars...or Alien eyes...nobody can really say!

Witness protection for dogs...
I think this could be perfect!

The picture shows how she gets table scraps...
you try saying no to those eyes.

Yarn bombed bicycle

Many...many...childhood hours drawn out in sidewalk chalk...thank you street artist!

Tiny Batman can beat down any foe...
with any number of heads

another slightly smallish batman

Batman exploring the pulmonologist's model

This is the trunk after The Bug spent 3 weeks taking apart our organizational efforts...ahh camp!

Happy Birthday to Me

Yup...I made it another year.  I thought I was turning 36...but my parents let me know that I am actually turning 37.  I swear the year of Taxotere and Carboplatin I lost time.  I have been a year behind for my last 2 birthdays.  No matter...I am turning 37...and that feels good.  
Tonight I will be enjoying the company of my family and friends in the only way I know how...surrounded by rainbows.  I have tried to pinpoint when my love affair with rainbows began.  I collected stickers as a child and I was always so so happy when I would get a new rainbow sticker.  I liked them even better than the scratch and sniff stickers I got for having a fit free allergy shot (I didn't have very many scratch and sniff stickers.)  
Seeing a rainbow in the sky makes me giddy and the few times I have been lucky enough to see a double rainbow I thought I might pass out on the spot...it's a good thing I did't pass out because I saw one of my double rainbows while driving.  I love making rainbow cakes where the icing is plain old white but the cake inside is all the colors of the rainbow.  
If I take the time to organize anything...I organize in rainbow order (nail polish, clothes in my closet, colored pencils, stuffed animals, etc.)  
The Bug insisted I get a pillow pet.  She was convinced my life cold not possibly be complete without a pillow pet.  So for about a year I told her the only pillow pet I wanted was the moose.   The moose had been discontinued, so it was a good way for me to get out of getting a pillow pet without hurting "The Bug's" feelings.  Then we were walking through the mall and there it was the only pillow pet that could ever hope to trump moose...rainbow...tie dye...unicorn.  I mean really...it is like the pillow pet people opened up my brain and took three of my favorite things and mashed them together.  so now I have that pillow pet and if I get scared she makes it a little better.  
I also love how many of my friends are also enamored with all things rainbow.  I guess we rainbow folks tend to seek each other out.  At least 2 of my closest friends have the same OCD tendencies as I do when it comes to the rainbow.  There is an order to a rainbow in the sky...so there should be an order to all other rainbow things.  If I find something rainbow hued but the colors are in the wrond order or there is a color missing I keep on walking.  It seems silly, but his name is ROY G. BIV.  Not YOG R. VIB or any other silly variation.  
So there you have it...one of the many quirks I have picked up along the way during my 37 on this planet.  Hopefully I will have another 37 to pick up many many more odd little things that make me unique.

To the Moon and back my friends,
Sarah

What is it like to fight stage IV cancer?!?

I read this yesterday and I wanted to share it with the people who read my blog.  I feel this puts into words how chemo changes when fighting a stage IV disease.  It is definitely a marathon and an art.  We are in it for the long haul so we can stick around for our families...but if the side effects put us on the sidelines of life then what is the point.  So here is the Facebook note that explains things better than I could ever imagine

Dear Everyone,

My great news is that the chemo that I am on (Doxil) is working. The ascites is GONE and my belly is flat, my digestion has improved so significantly that I can eat normal quantities and no longer do I randomly puke when I had planned on doing something entirely different with my time. When treatment works in this dramatic way, it is nothing short of a miracle. Three months ago I was so debilitated that I had difficulty with basic daily routines. In contrast, I am in fantastic shape. It is hard to express what it is to be "going down" and then miraculously bob back up to the surface. It's the ultimate in second chances and for anyone who has ever had one of these experiences, whether it was physical, emotional or spiritual, you remember. It goes without saying that my gratitude for this drug is immense.

But before you lift Doxil up on your shoulders and sing what a jolly good fellow he is, let me tell you that at my IV League support group meeting yesterday, we nicknamed Doxil "The Asshole Drug". It is by far the roughest chemo I have ever been on. Two weeks after my last treatment, I developed burns on my thighs that made it painful to sit, stand, walk, or sleep. Once the burns started, they became increasingly severe each day. It was as if I had the worst sunburn ever and then doused myself in suntan oil to return to the beach every single day for another two weeks. I used every numbing spray, every lotion and potion from aloe vera to silver sulfadiazine to lanolin to urea cream. (Don't ask me whose urine it was. I don't know!) The only effective treatment has been icepacks and time. My friend who is also on Doxil gets burns on her palms and the soles of her feet that are so severe that she is bedridden for six days out of the four week cycle. She describes the feeling as "walking on glass". We swap war stories and we both feel incredibly lucky to have someone to compare notes with. There is tremendous power in not feeling alone. This I have learned.

So in spite of my declaration that Doxil is the asshole of the chemo world, it is like an aggressive sales person who you wouldn't want to hang out with, but is undeniably successful. Had I never had symptoms of cancer perhaps I would say, "To hell with it! I'm not putting this poison in my body!" But I have been near the bottom and I know what that looks like now, so I will stay with the asshole because the payoff is golden. The guy knows how to get things done. And yet we must be cautious to balance between dangerous side effects and effective treatment. To die of a skin infection would just be outrageous so we tread delicately and observe closely.

And now the balancing really begins: With Dr. Kampe as my co-pilot, we will try our best to reintroduce the drug before the cancer starts causing symptoms but after good healing has happened for my skin. We will try to give enough of a dose so as to be effective but not so much as to cause side effects that can be potentially life threatening. We will do our best to observe whether this is acting like a toxicity issue or more of an allergy. We will follow the science and we will follow our intuition, all the while understanding the need to be open and flexible, as my body gives us information on which direction to go.

And once again we recognize that treating  Stage IV disease is often far more of an art than a science.

A quote that keeps popping into my mind lately is from Rabbi Nachman: 

"The whole world is a very narrow bridge and the most important thing is to not fear at all." I'm not sure if truer words have ever been uttered.

So onward we go. Straight ahead. One step at a time we don't look down. We can do this!

Love, 

My chemo confidante

See so eloquently explained.  in the comments on this note it was also decided that our chemo regime is a tad like a marriage.  Maybe an abusive marriage that at times all I wish is to escape, but a marriage none the less.  And as said in the comments this one is definitely a "til death do us part" type marriage...no divorce as an option...unless death is the goal.  I have often wanted to give some sort of insight into how it feel to battle this disease and I think this does that for me.  So read and enjoy...I will post something original soon...I swear.

To the moon and Back,

Sarah 

April 8-14: Week in Review

 I got out more this week than normal on a chemo week.  My chemo is behaving in a rather odd manner.  I had my treatment on Tuesday and had the typical steroid stomach, but then nothing.  I actually felt as close to normal as I had in weeks, so I decided to take advantage.  Around Thursday night I had to have a bit of a slow down, because I started to feel fluey...tight joints painful muscles...chills...hot flashes the whole bit....but never any fever.  This seems to be par for late in the cycle Abraxane, but  with my chair and a pushy aunt I was still able to have a great week!  So here they are...I hope you enjoy the photos as much as I enjoyed taking them!

Monday:  I found this gorgeous rose blooming on some random corner.  I felt like it should be under glass.  The colors were so vibrant and different to be produced by the same plant.  I dunno it just amazed me so I asked Mimi to pull over so I could take a couple of pictures!

Tuesday: Another treatment day...another day for me to spend  being silly to pass the time.  I cannot figure out why people are not snatching up these hair hats...I mean really you can choose any hat an be any hair color you choose!  I also wore my dayglo NOCC walk shoes.  Whenever I wear these shoes at least one person comments on them.

Wednesday:  I think I might have a slightly unhealthy obsession to gnomes.  This is my orange gnome hiding in my new mint growth.

Thursday: Throwback Thursday...this is throwing it back to 2006...my precious angel's first year at camp.  This was the only year she rode the bus, because I was a nervous wreck wating to hear if they had mad it safely to camp.  Of course sweet Rosie stayed with me while the Bug had a big time at camp.

Friday:  I had my very first accupuncure appointment.  I was a little bit nervous...but it was so relaxing and did help with my back pain.  I don't mean that I am cured or anyhing...but I can walk around a little bit more than I could beofre...and that is freaking amazing...all done with these tiny pins.
My dad is not doing much to contain my gnome obesession..he brought me these 2 "gnomies" that he found at Walgreens aren't they adorable!!!!!

Saturday:  My aunt picked me up and took me to see my Aunt and Uncle's tent in this litle pop up market.  In my opinion they had some of the most amazing stuff to sell...but some of the other booths were alright.  I got this lovely dragonfly for one of my new flowerbeds.  The pictures doesn't relly do the insiect justice.  It is amazing  when the sun hits it just right it lights up like a prism with all the colors of the rainbow.  Then I took some shots in the King's Whimsy tent.  My Aunt and Uncle are so talemtned and I love looking at all the new ways they have found to create amazing works of art  The rainbow cable braid wins it for me!

Sunday: I cheated and used a Saturday picture...but I didn't edit it ntil Sunday.  I was so ired and by this day my chemo pains had totally gotten the upper hand.  So I had to dig through some other pics from this week...it is onlu one extra day old...oh weell...it has to be o.k. this project is ultimately for mr so I can fudge a little on the ruls.  Anyhoo...this is a pic of the color coded books at Brewed...arent's they lovely?

Tiny Bat...no Tiny Robin visits the Arboretum

About a month ago we (Mimi, The Bug, and I) made the trek to Dallas to spend the night with my Aunt (Big Red), and visit the Arboretum.  It was the beginning of Spring and the Arboretum had over 500,000 tulips on the grounds.  I realized when we arrived in Dallas that Tiny Batman had not made the trip.  Luckily my cousin has a little boy who LOVES superheroes and he had a Tiny Batman, Tiny Robin and Tiny Superman of his own.  He said we could borrow them for the trip.  I thought that was very sweet, but I wasn't sure he would remember the next morning.  He did remember and was so excited every time I took a picture of Tiny Robin enjoying things at the Arboretum.  

UM....I'm feeling a little like lunch...made of metal...silly superhero!

UM....little boy...young man...can a tiny superhero
get a helping hand? Where are you going?!? 

Help Help...I being eaten...oh wait this lion is stone like the frog right?!?

Tiny Robin invited his pal Tiny Superman to join us for some queso and a Topo Chico!

It was a little windy, but the sun was out and the temperature was very mild, so this was an amazing way to kick off our Spring Break.   I spent some time out of my chair getting down on the same level as all the gorgeous flowers.  I realized that in almost every tulip bed there were daffodils.  Aunt Sherry tells me that they do this on purpose to help with pollination.

Look the bug has a smile and it still works!

 

My mom has a Camelia bush at home and the blooms always surprise her
because they pop up before anything else is in bloom.

I borrowed these muppet gloves from BIg Red/Cici

The Bug....turned into a cat!

work those glasses Miss Soph

Little Red aka the Maa, and The Bug

We wrapped everything up at the end of the day having AMAZING tacos at a restaurant called Torchy's Tacos!!!!  If you have one of these anywhere close to you...don't walk...run...don't get it to go...eat there.  If you are a queso lover...definitely try the queso.

This collage photo says it all...it was a Damn Good day!

To the moon and back my lovelies,
Sarah