How does your garden grow?

My new yard art!  I picked it up yesterday at Art in the Park.  I love it for a number of reasons, one of those being it will always remind me of what a lovely day I had with such great friends looking at amazing art, listening to great music, feeling the sun warm our outsides as well as our insides, tasting fabulous food and driving a little erratically up and down the hills of Francis Park in the golf cart (narrowly averting our chance to 'jump' a little ditch!).

New recovery formula?

I'm cautiously optimistic regarding how quickly I have  'bounced' back from my second dosing of chemo.  I was pretty shaken up with the muscle weakness and the extent of the tingling and the twitching in my muscles (no it wasn't my fat getting used up, bummer).  The home health nurse said the muscle twitching is a sign that I need more calcium and magnesium in my system.  I showed her all the vitamin supplements that I was taking and she said I had a good mix.  I said I will increase my calcium intake then and add magnesium.  She also reminded me to drink plenty of fluids because the 5-FU is so dehydrating.   I have been drinking about 5 liters a day (my normal is 3).  She asked if I was experiencing any constipation.  I told her that last time I did and it was just awful.  It took me five days to finally go and that was after I used my organic senna herbal tea.  Once I did go, I felt like myself again (don't we all, lol).  My plan this time was to do the tea early in anticipation and not wait five days.

Rolling around in a briar patch

Day two of my second dosing of chemo and I feel like I have cactus needles in my hands, fingers (even under the tips of my fingernails). My mouth is tingling and numb all at the same time.  I have the cold sensitivity even more now... Actually had to wrap a beverage in a napkin to carry it. I had forgotten about it when I drank from a water fountain and the water felt like shards of glass hitting my lips. I jumped back!

My leg muscles are very sore too. Walking up and down my stairs has been really hard because my calves are locking up. I also feel twitches in my legs but I'm thinking that's just the fat getting used up. Wishful thinking I know.

And there will be chocolate....!

Tomorrow I return to the Chemo Infusion Lounge for the second dosing of my twelve treatment regimen.  Only 22 more weeks and chemotherapy will be finished.  I like to plan things out and write stuff down on my calendars (both electronic and tangible).  Somehow it makes it seem less ominous (“12 treatments over six months” echoing in a big black cave…) when I can put an end date to it.  In this case, my last date at the Infusion Lounge is February 12, 2014 and my last day to be disconnected from the 5-FU drug is February 14, 2014 (I’m not into numerology but the way those numbers fall seem pretty cool, don’t you think? – 2-14-14 or 02-14-2014…) The irony isn’t lost on me either; it will be the first Valentine’s Day that I’ve looked forward to in at least 11 years!   I’m already planning how I’ll decorate my living room with red and white streamers and I’m going to send myself red roses and balloons… And there will be chocolate! Every Year!  I’m taking back Valentine’s Day! Valentine’s Day will forever be redefined and will be a celebration of love (no longer a painful reminder about being single) in the truest “thank god I’m alive” form.   So boyfriend or no boyfriend, husband or no husband, Valentine’s Day, it will be mine. 

So continuing on, tomorrow’s my second ‘date’ with chemo. 

News Flash!

This just in...

I am happy to report that my remaining ovary seems to have awakened from her sleep and is back on the job.  My night sweats have all but gone away and I'm feeling more like a purring kitty cat than the DEFCON 5 Porcupine yelling profanity-laced vitriol at the sweet Sisters of Charity for praying on their rosaries too loudly!  I am continuing the daily Black Cohosh supplement because I don't mind giving my body help in getting itself sorted out.  But let me tell ya', it is nice to smile a true smile and not just "grit and bear it".

Also, it seemed to take 6 days from the chemo treatment till the side effects wore off.  It has been nice to drink slightly colder than room temperature drinks and to chew without feeling like a million tiny nails were being simultaneously driven into my jaw and up my head. 

I like feeling like myself.  I am curious to see if what happened (side effects, emotions etc) after the first treatment is the same each time OR if by knowing what to expect, I can intervene and with supplements etc. shorten the recovery time?  Who knows?  I'll be sure to keep you posted.

But for today and till my next treatment (9-25) it's nice to be feeling good and happy.  Very nice.

Dragon Donkey

People have been asking how I'm feeling and I figured this was an easy way to disseminate the information.

I have felt weird. I still feel weird.

Thursday was fine.  Energy seemed normal.  I almost felt happy.  I was still very anxious learning to live with a drug attached and pumping into my body and trying to coordinate the black fanny pack with my other black clothes. But for all considered, it was a regular day.

I have had an almost immediate side effect of chemo-induced neuropathy and can only drink room temp or slightly warmer fluids. Anything colder feels like it’s burning my mouth and the back of my throat is very sore.  Eating has been a chore because of the shooting pain through my jaws when I begin to chew (seems to take 5-6 chews before the pain subsides).  The home health nurse said these symptoms should decrease as the days go by. She came to see me and disconnect the 5-FU drug on Friday late morning.  She warned me that my energy levels would kind of bottom out over the next two days as the steroids they administer right before the chemo drugs work their way out of my body.  She said to just take it easy and to listen to my body. 

It could be over just like that!

Snap! It's over. Never to breathe again.  How do you make sense of it? Why do some live on & others are cut down right now? And what do you do?

I learned today of the passing of a former schoolmate. He was only 42. He had just returned from an anniversary weekend with his sweetheart. He was living a charmed life in Hollywood. He died of heart failure. His parents have to bury him. I look at his pictures on Facebook & cannot imagine that the world won't get to see his beaming smile anymore. I weep for the world.

Jay was a soccer player when I was a soccer stat girl. Best job ever in high school! He and his best friend Kirk were inseparable. I remember the two of them smiling, joking, teasing, flirting with me awkwardly (awkward for all of us because we were just learning how) and basically being these bright bursts of joy & energy. They were so much fun to watch on the pitch as well. A lot of fun. It is bittersweet recalling these memories now because Jay has died.

I feel for those left behind as they grieve and work to heal their hearts. I cannot imagine the incredible emptiness & ache they are feeling along with pure shock & bewilderment.

Why? Why him? Why now?

I don't want to write a bunch of cliches as a means of making sense of it. Because you really can't.  What it does is make me pause, celebrate that for a few years I got to be in Jay's beam of energy, and be very thankful & grateful for my life every day. It reminds me to not take for granted those I love nor procrastinate making time to see them, talk to them, and/or write them. Because it could all be over, just like that.  Snap.

One down, 11 to go

I'm home.  Happy to be here even my yappy canines make me smile (for right now anyway, that could change, they are pretty yappy).

Anyway, I have my lovely chemo fanny pack.  I'll be modeling it at this year's Fall Fashion Week in NYC - who wants to help me bedazzle it?  Inside my black chemo fanny pack (black because it's slimming, come on ladies, stay with me) is a baby bottle sized pump that has a balloon style "membrane" which holds the 5-FU medicine.  I personally thought it looked more like a condom than a balloon

Holy Fuck Monsters Batman!

Do you know what it's like to be thrust into a hormonal imbalance?  Waiting every day for it to get better?  Not really knowing if this emotion or that emotion is a side effect of the imbalance or just how it's going to be for the rest of your life?

Well it sucks.  Big. Time.

As regular readers know, one of the unexpected outcomes of my colon cancer surgery was the removal of an ovary that was encased in an endometrial cyst.  It was simply too dangerous to leave in although it was not cancerous.  That action has impacted my life more than anyone could have told me.  The doctors all said in the hospital that the remaining ovary would pick up the slack.  Did they tell me when? 

What she said....

This poem was written by a friend of mine from high school.  She had posted it to her Facebook page and it resonated deeply, to my core,  with me.  I couldn't have written it any better.  I'm putting it here so I can always have a copy and so you can read it too.  Let's discuss, let's explore, let's decide.

Move Me - by Melanie H.

I want to be moved
dammit,
so move me
move me
make me
feel
push me past
my resistance
into that wide open space
give me something
beyond
the ordinary
beyond what you give
to the rest of the world
show me your naked soul
and I will gasp at your beauty
show me your unveiled eyes
and I will weep at your truth
show me your heart
cracked and broken
and I will hold it
with more tenderness
than you could ever possibly
imagine
and if you trust me
if you give me time
I will show you how
those very cracks
make you whole
I crave a depth
uncommon
I crave a meaning
deeper than
surface
I crave a glimpse
of spirit
divine
and I crave a touch
so primal and
earthly that it brings me
to my knees.
you bring me
to my knees.
I want transcendence
I want to be shattered
I want to gasp at the
brilliance of
ordinary moments
and extraordinary times
and these are the most
ordinary
extraordinary times
so shatter me
I want to know the secrets
your bones hold
I want to see drums of passion
beat
behind your fluttering
eyelids
I want to know what moves
you
Where your center lies
and just how far I can go before
I reach the edge
of you.
I want to feel
everything
push myself to feel
more
push myself past the pain
lean hard against discomfort
fight numbness
and complacency and
comfort
in search of
more
in search of this
in search of that blinding
searing
goddess power
to touch the
muse
to break the spell
to move the world
I want to be moved
dammit
so move me.

Port coming soon

The port will be inserted Monday afternoon.  Still waiting on approval from insurance company for chemotherapy treatment which is why I don't have an actual chemo start date yet.  Can you see me rolling my eyes?  Look closely, now can you?

This waiting game is worse than what I used to call "TV time"... the hurry up, get ready, get on set, get mic'd up, seated, adjust the seat, adjust the lighting, okay ready to go.... five mins....... four..... three.... two.... one.... ten seconds down to the floor director just pointing his finger and the red light illuminating on Camera 1...

Celibate, sober & toxic

Bullet points:

IV port to be put in me sometime this week (probably Thursday or Friday, I'm guessing.)  It will be an all day affair and I will be sedated (not intubated, but sedated) so I've got to have someone drive me and stay with me; I'm trying to line that up. 

 

Chemo to start most likely next Tuesday.  They prefer to do chemo Mon or Tues and I have dental appointment Mon, so there you have it.  But Dr.'s assistant will call me with the actual dates. 

 

Lengthy explanation: