chemo

We have returned.  What's that?  You didn't know we were gone?  Great.

Our trip had been in the works for months, with the primary purpose being to visit Boyfriend's brother, sister-in-law, and new nephew, James.  Road tripping inevitably involves side trips and unexpected delays, but the plan, as loosely defined as it were, was to get out of California and do something different!  No doctor appointments, nothing concrete, no obligations.  Just drive and see.  Sweet flexibility!

We didn't make a big deal prior to our departure, because my platelets were scary low, throwing my chemo schedule for a loop because "there's really nothing you can do, but wait for them to go back up again."  I wasn't going anywhere until those platelets went back up again.  So much for flexible.

Our first big road trip, our first vacation in, err... two years, all up in the air - because I needed more platelets?

Nobody was going to tell Girlbert there was nothing I could do, so I took those uncooperative little platelets into my own hands.  I opened my mind, Googled, asked my cancer support group friends, took my vitamins, exercised, and I ate and ate the biggest variety of foods I could come up with in five days.  On day five I took my next blood test and marched it upstairs to oncology.

"This is better - whatever you're doing is working!" My uber-oncologist smiled and shook his head as he flipped through the results of my blood tests, past and present.  I'd done my homework, listened to my body, and more than doubled my platelets in five days.  Whew for a flexible mind!

I started my chemo that night.  We packed up and left the next day.

More on the Flexible Adventures of Girlbert and Boyfriend coming soon!

It's been over a year since the event that led to my diagnosis.  Apparently this blogging thing is hard to keep up with when you're not all hopped up on steroids, so I haven't been keeping you all as up-to-date as well as I would like.   Not to mention the fact that all of my excess energy has been channeled toward growing a brand-new head of hair!  (Evidence in the picture!)

So - I've compiled a list of questions that I find myself answering.  Frequently.  I've added a NEW PAGE (a link in the menu above, as well) to this site for those questions, but here's a little teaser:

What and when was your diagnosis?
I was diagnosed with a type 2 astrocytoma in my right temporal lobe - brain cancer - April 27th, 2009.  I'll never forget the date, because I had to make sure and write a blog post honoring my little brother on his 30th birthday (April 26th) before I went to the hospital for what seemed like a possible concussion.  It's important to have priorities.

How did you discover your brain tumor?
I had a seizure while home alone April 24, 2009.  I had been getting ready for bed, it was late, and I brushed my teeth and washed my face.  Then suddenly, I found myself, 'coming to' at my desk, in front of my computer, which had been shut down already.  "Huh - I thought I already went to bed,"  I thought, and went to bed.  I had no history of fainting or seizures.

The next morning I had a headache.  And a fat lip. And when I got up to pee, I noticed the bathroom rug was all wadded up in the middle of the bathroom floor.  Something wasn't normal, but maybe I just tripped and fell in the night and hit my head and didn't remember.  When Boyfriend returned home later that night, and I told him what happened.  The headache persisted.

The following morning the headache was worse.  We talked about going to the ER to see if I had a concussion, but I didn't have insurance and we were broke.  I'd had a head injury before - I knew they'd want to do a scan - cha-ching!   So I decided to take a nap.  After I laid down, the left side of my body began to tingle, my ears began to ring and I detected a horrible taste in my mouth.  (I now refer to these feelings as my 'conscious seizures'.)  I was scared, so I called for Boyfriend, and described what was happening.  It was very uncomfortable, something was definitely wrong with me.  It was time to go.

Boyfriend called his boss about getting his payment for work early so that we could go to the ER.  His boss said, "You just take her, and I'll take care of it."

So we went.  As soon as we got to the ER, and the words "hit my head" escaped my mouth, I was put in a neck brace and strapped to a gurney.  Here we go, I thought.  I had a CT scan and was brought back to a waiting room with Boyfriend.  I had another 'pins and needles' episode, telling Boyfriend, "It's happening again, I'm having that feeling again!"  He called the nurse and she gave me an anti-seizure drug.  She explained to me that what I was feeling was a mini-seizure, that I'd probably had a grand mal seizure at home two days ago and hit my head.

Then the doctor came in. "We looked at your scan.  I'm so sorry, but you have a very large tumor in the right side of your brain.  That is probably what is causing the seizures.  But you need to go to the other hospital for observation and to have an MRI."

Boyfriend was holding my hand, so I squeezed it, looked at him and the tears started.  "I'm so sorry," was all I could think to say.

His face was already even with mine, his eyes locked on my teary ones, "We'll get through this, don't worry."

One wipe with the back of my hand, and the tears were gone.  Of course we will.

More...

My March round of chemo came just after my return from traveling, so the down time was almost a welcome relief, even if I didn't feel so hot for a week or so.  When it was over, I started to exercise again, even rode a horse a few times. (Woot!)  I was even thinking about teaching some riding lessons.  Getting into a routine felt normal, and I've been craving some normalcy for so long.  It's spring, after all, the perfect time to start making some plans!

Then it was time for my April (this week's) round of chemo.  The day before I was to start, I told my brother, "I'm not even nervous this time!  This one will be easy, I just know it."

Easy.  I said it.  And I believed it.  But easy it was not.  It's been a rough week.  Chemo was as bad as I remembered it, if not even just a smidge yuckier this time.

I spent most of the week that I was not in bed in a puddle on the couch.  Just pouring myself from one horizontal surface to the next.  Catching my breath on the toilet every time I had walk to the bathroom.  Spending a lot - too much - time reflecting on the absence of normal in my life.  The absence of normal in Boyfriend's life, too.

Then I went to my Cancer Support group last night, and the evening's focus was the caregivers and significant others of the cancer patients and survivors. "Cancer Couples Night", if you will.

Boyfriend and I shared our two cents about how hard we've worked over the last year to find our way in the maze that is brain cancer, unemployment, and Medi-Cal. And despite all of our hard work and effort, sometimes it seems like it will never end.  And we listened every other couples' story, and realized, They're doing it.  We're doing it.  And suddenly the only feeling I had left was amazed, awestruck gratitude for the man sitting to my left, squeezing my hand as we talked.  My teammate. Squeezing my hand as we listened.  My biggest fan.  Squeezing my hand and wiping my tears when I cried.  My superhero.

Thank you, Eric, for showing me how to love and be loved.  You are the squeeze of my life.

Dear Readers,

Cross your fingers that my Medi-Cal card comes by the time I get back to California next week, so I can pick up my next round of chemo on as soon as I get home.  Everybody is getting really tired of hearing, "I'm still pending for Medi-Cal."  Myself included.

Even Betty White is up in arms about it!

XOXO,

Girlbert

As I stood at the kitchen sink this evening, on my own two feet, washing the dishes that I had just eaten dinner off of, not feeling nauseated or woozy or sick in any way, I thought, "Things are looking up!"

And BOOM!  I had a post to write.  

This week marks two years for Boyfriend and I.  We had our first date two years ago this very week.  Things were most certainly looking up for me then, just having moved to California from Colorado, I was looking forward to a fresh start.  Just like we are now that I've gotten through chemo-radiation and my first five days of monthly chemo.  We now know what to expect (chemo sucks for all five days, plus three or four after) and are looking forward to a little more fun in the year ahead.  A fresh start.

The first date story:

I met a cute sailor on a wine tour on a previous trip to California.  Now that I was here, I had invited him up to Los Alamos (from Somis, about 100 miles!) for lunch, and if he wanted to stay for dinner, I would love to cook him dinner, too.

Lunch was a bold statement about the way I like to eat – pasta sautéed with tuna, capers, garlic, and anchovies in olive oil.  He was impressed at this brazen combination of flavors for our first meal.  After lunch, he wanted to take me on a drive.  It had snowed in the mountains the day before, and wouldn't it be fun to go check it out?  I thought, a spring snow – how nice.  Didn’t I move here all the way from Denver because I can’t stand the snow?

After a beautiful, winding drive up the mountain, we stopped and got out of the car to check out the view.  We were standing at the top of a mountain overlooking the Santa Ynez Valley, arms wrapped around one another for warmth, and he explained that all of the green leaves in the trees are mistletoe, which is actually a parasite.  Mistletoe live in the trees, getting all their nutrients from the other organism.  I had no idea - a real botany lesson!  So, it’s windy, we’re freezing (did I mention the snow?), and we get back in the car to drive down the mountain.  

He's pointing out the mistletoe growing on the trees on the way down, and we drive under a bit of it growing over the road.  He stops the car, and says, “Look up.”  I’m thinking this is going to somehow further my education about mistletoe and associated plant life, so what do I do, but what I’m told.  I look up out the sunroof, and there is indeed a clump of mistletoe hanging over the car.  As I turn my head toward him to smile, my mouth runs into his.  That certainly did further my education about mistletoe – not in a way I would have guessed, but  it did, nonetheless.

Things are looking up, as long as you know where to look.  Keep looking up!

I received this fantastic email from a friend, then passed it on to a handful of friends, one of whom posted it on her blog.  Huh.  There's a novel idea.  Well, YAHOOIE for that, because I get to put some new content on my site without having to write much.  Which is good because I'm on my monthly dose of chemo this week, and the writing's just not flowing...

They call this chemo-brain.  It's like the process I have to go through to convice myself that taking a nap is better that just being a grouchy blob on the couch just to be upright for a few hours a day.

Anyway, this is a great story.  Enjoy!

One evening an old Cherokee told his grandson about a battle that goes on inside people. He said, "My son, the battle is between two "wolves" inside us all..

One is Evil.  It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.

The other is Good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith."

The grandson thought about it for a minute and then asked his grandfather: "Which wolf wins?"

The old Cherokee simply replied, "The one you feed."

My dad writes of this 1978 photo, "...both you and your dad had hair."

How cute are we?

I'm certainly not missing my hair or saddened by the loss of it, thanks to a number of factors:

The first being that I find it quite exhilarating that I can get in and out of the shower, dressed and be out the door in 15 minutes.  That's crazy, even considering the fact I've always prided myself on being a pretty low-maintenance horse girl, comfortable popping a ball cap over a pony-tail most days.  Even when I wanted to get a bit gussied up, I was a 45-minute-max, shower-to-door-girl.  No all-day, multiple-hour beauty routine for me.  But 15 minutes?  With a shower?  Wild!

The second, of course is that Boyfriend continues to be fascinated by my baldness, loves to shave the left side of my head to help me keep it even, and tells me how cute and sexy I am, ummm, pretty much every opportunity he gets.  Feels good.  And I continue to feel like I won the Boyfriend lottery... How is it that a girl could be so lucky?  Sigh.

BUT - I have become OBSESSED with other people's hair.  I find myself staring at peoples' hair, wondering, Should I try something like THAT?  After years of KNOWING my own hair, and what I think works for me, my face, my hair type, color...suddenly there are SOOOOOOO many options.   And it would have NEVER crossed my mind to cut my hair short previously.  NEVER.  I'm going to be forced to try some short styles as it grows out.

What about highlights?  And why not some fun with colors, too?  Blonde?  Red?  Things I would have never entertained previously because the committment would be too permanent on longer hair.  People have also told me it may very well come back different - curly, thicker, finer, straighter.  I can't wait to see what I have to work with!

So in light of the fact that Monday is my LAST DAY OF RADIATION, I'm open to suggestions.  Because it's going to start growing back soon, and a girl has to think about these things!

:-D

Enough with the green wig, right?  Did she do it?  Did Girlbert shave her head?

YES.

And nearly a week ago, at that.  But then I went and got all sick with a broken immune system, and have been useless to edit video and write anything to do it justice.  And you have to do something like shaving your head JUSTICE, am I right?  

Because it's not everyday that somebody shaves her head BALD.  Even Britney only did that once.

Extra special thanks and so much gratitude to the entire staff of the Hans Wolf Salon and Spa in Santa Barbara.  Ryan is the man responsible for the Extreme Girlbert Makeover a couple of months ago, and he did the head-shaving honors, joyfully declaring, "I've always wanted to shave a woman's head!"  So glad to be of service.  And Colleen Elizabeth fixed up my eyebrows so that my face would be up to the challenge of pulling off BALD.

I finally get a good, clear view of my biopsy scar.  Kinda Franken-like, just in time for Halloween, I guess.  

And then my brother shaved his head, declaring, "I can't let you be the only bald Tomlin!"  We've never looked so alike - obviously!  Boyfriend, of course, shaves his head anyway, so I kinda feel like the hot, bald chick now.  It helps that he tells me that every five minutes, of course...

My life is a fairy-tale.

If only I could click my ruby-slippered heels together and have each of my favorite bald men on either arm...

Despite all my best efforts to stay unexposed and rested up, the chemo and radiation have supressed my immune system enough that I have a pretty good chest cold.  No worries (or temperature, which can be a biggie for a person in my condition), though, I seem to be clearing it out, and should be over it in no time at all.  Longer than the average person, obviously, but I'm on the up and up.

But my docs want me wearing a mask on my face in public, (the better to cover the steroid fat-face and acne, I say!), hand sanitizer in my back pocket, and be really cautious.  As in, do you really need to go into CostCo today?  Probably not...

But we did have some health and banking-related errands to do yesterday, so I got to get out of the car and go into some places.  And you wouldn't believe the looks!  One of my favorite stops was to the bank for a deposit, and walking in wearing my hat, sunglasses and mask - you should have seen all the teller's faces!  They asked, "Can I help you?" through some very intense looks and gritted teeth...fun!  
"Just need to make a deposit," I said, taking my sunglasses OFF (sheesh) and digging through my purse.  They remained ready to push that button.

I did notice that every other person I came across did a double take, but I'd have done the same (and probably have), in the past, never thinking there are people out there with compromised immune systems that have to be really careful during cold and flu season, not to mention this swine flu thing.

But here's the cake:
Toward the end of our afternoon errands (we'd already deposited Mom at the airport, so SAD to see her go - such a good time with her!), we decided to pull over at a coffeehouse on State Street and let me run in and get a couple of cups of hot tea, Boyfriend staying in the car.  So I pulled my mask on, hopped out and opened the coffeehouse door to THE. DIRTIEST. LOOK. EVER.  The dirty look was shot by a customer who'd turned from the counter to watch me step inside.  I smiled through my mask, he was probably unable to see it.  He turned away, finished paying, the woman he was with standing off to my other side, waiting for their order.  Then he turned back to me.  

"ARE YOU CONTAGIOUS?"

With what, the swine flu?  Like I'm just walking around with the swine flu?  'Cause I heard they all can't get out of bed, or are in the hospital.

 "Actually, I'm a cancer patient, and the chemo and radiation is suppressing my immune system, so I'm wearing this (pointing to my mask) to prevent myself from being exposed to anyone else who might be carrying something."  Like yourself, sir.

"Humph," he frowned and walked past me.  

My eyes followed, and the woman he was with looked  ABSOLUTELY. MORTIFIED.

I turned back to the counter, and all the teenage coffee shop workers behind the counter were significantly wide-eyed with disbelief at what they had just witnessed.  In unison, "What can we get you started?"

"A cup of chamomile, and a cup of jasmine tea, please."  

That was some yummy tea.