boyfriend

Current location: Aurora, IL, baby!

We're traveling again, so I'm still sorting through pictures and stories, but I've come up with a fun list of fast facts a la Girlbert and Boyfriend's Big Road Trip. 

Equipped for travel and leisure with:

• 1 1991 Toyota Land Cruiser
• 1 bitchin' roof rack (more on that later)
• 1 2-person tent (cozy, with a GREAT view!)
• 1 full-sized air mattress
• 1 feather bed
• 1 blanket, set of sheets
• 2 down comforters (for desert camping, no less)
• 2 mountain bikes, helmets, shoes, tire pump, etc.
• 3 yummy pillows (because two couldn't possibly suffice)
• 1 trunk containing food and food preparation, including Grandma's cast iron pan and Boyfriend's favorite (favourite) wooden spatula (which we left at the first stop, but thankfully promised to be kept safe by our gracious host)
• 2 suitcases
• 1 propane stove

Electronically prepared with:

• 1 inverter with 4 AC plugs with which to charge all electronic devices while on the road
• 2 iPods
• 2 cameras, 1 point and shoot with video, 1 digital SLR with 2 rechargable batteries
• 2 tripods (1 Gorillapod, 1 gianormous regu-pod)
• 2 cell phones (1 smartphone; 1 waterproof, 3 year-old, flip phone - can you guess who belongs to which?)
• 3 GPS'- Garmin Forerunner for biking/running, Garmin 60Cx for bike/auto navigation, Nuvi 760 for auto navigation
• 3 laptops, 1 Windows machine, 2 linux machines that sometimes have issues finding wireless, hence the Windows... (He-hello, Tech Support?)

Just the stats, ma'am:

• Days on the road: 17
• Miles traveled: 2,615 (4,218K for the little brothers out there!)
• Number of videos taken: 43, totaling 2 GB
• Number of photographs taken:  2,388, totaling 17.9 GB (seriously!)
• Number of times we used the Windows computer: 4
• Number of times we used the linux machines: 2
• Number of grocery runs: 2
• Number of meals out: 8 (out of 51 possible meals!)
• Number of peanut butter and jelly sandwiches eaten: 12
• Percentage of crap brought along that was actually used: 32%
• Times we set up camp: once
• Bumper stickers collected: 13
• Average MPG in the Land Cruiser: 12.5
• Days we were home before getting on a plane to our next (exotic) destination: 6
• Number of doctor appointments and blood tests in those five days: 4

Apparently, this is how two nature-lovin' computer nerds traverse the western states in a Land Cruiser!  First stop: Henderson, NV for Girlbert's first hairdo... stay tuned!

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...

We spoke with Boyfriend's 95-year-old Grandma in Chicago the other day.  She came over to the U.S. from Poland when she was just sixteen.  By herself.  She didn't know a word of English when she got off the boat in America.  So, she taught herself English by reading the dictionary.

Boyfriend: "Do you still read the dictionary, Grandma?"
Grandma: "You bet!  It's my bible!"

You go, Grandma.

(Grandma Chowanski in the center at the baby shower in March.  My mom and I on her left. Kurt and Isabel on her right.  Eric's parents, Wanda and Walter, on the far left and far right.)

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.

When I was back in Illinois last month, the timing of my visit allowed me to attend a baby shower for Boyfriend's brother (Kurt) and sister-in-law (Isabel) - a.k.a. Kurtabel. (What?  It's waaaay better than Isaburt!)  My first real, live, Polish baby shower was quite the experience, and I was thrilled to get to spend some time with Boyfriend's family.  My Mom got to come, too, giving her an opportunity to meet the whole Chowanski clan for the first time.  Grandma Chowanski, too.  It was great.

So baby Kurtabel has recently set the tone for what we already know about the rest of the Chowanskis - they do things their own way, in their own time.

James Willoughby Chowanski was due May 18, but entered the world nearly a month and a half early, on April 7, 2010.  And this little guy is running his own show, with Kurt proudly declaring (with a typical Chowanski chuckle), "He's screaming, all on his own!  All four and a half pounds of him!"

Welcome, sweet baby James.  Congratulations, Kurtabel.  Thank you, Chowanskis, for letting me be a part of your family.

More pictures from the shower here.

A couple of weeks ago, Boyfriend and I drove out to Vegas to meet Little Brother and his BFF for a series of adventures that can best be described as a Totally Gay Vegas Weekend.  My brother's BFF, Mike, is the world's most amazing hair stylist and lives in Vegas.  He's an honorary Tomlin - my other little brother.  He's also a fabulous host whenever we're all crashing at his place.  (Thanks, Mikey! XOXO)  Blast for not having any hair for him to cut and style this time!  So I got a mani-pedi while my bro got his hair done.  (Thanks, Little Brother! XOXO)

I know what you're thinking: "Girlbert, what kind of a brother makes his sister, her brain tumor, and her chaffeur/boyfriend drive all the way to Vegas to see him for the first time in over a year?"  And I'd say, "The World's-Biggest-Bette-Midler-Fan, that's what kind of brother!"  January 31st just happened to be Bette Midler's closing night after her two-year run at Caesar's Palace in The Showgirl Must Go On. I saw her on opening night with the same boys two years ago, so it only seemed appropriate that we were there on closing weekend.

Bette was A-MAZING.  Everyone was in tears for the last few numbers, including the Divine Miss M.  It was Boyfriend's first Bette Experience, and as he put it, "She rocked!  And she's hilarious - I had no idea."  I remember feeling the same way when I saw her for the first time on her Kiss My Brass tour - no idea she was such a fantastic entertainer.

And entertain us she did!  Her final performance was particularly moving because Bette was genuinely sad it was over.  Us, too.  We love you, Bette!

Check out more pictures here.

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!

[Oops - we forgot to post this one!]

Hi, Boyfriend here.  I'm writing because Girlbert continues to struggle with nausea, fatigue, and the lingering remains of another cold and as per Boyfriend's orders is resting on the couch.

This Christmas is, alas, passing so quickly.  And well, it continues to do so.   Today [Wednesday]  we dealt with three separate legal / financial matters and two different health issues.  Tomorrow we get to wrap a few presents for each other.  And go to the clinic for blood work.  But, "quickly" is relative and it doesn't seem to matter how old you are - Christmas just goes truckin' on by all the same.

Recently we drove to the barn to visit Lisa's old and ailing horse Stevie; and while Lisa licked Christmas card envelopes she read the names out loud.  It was a long list.  But one that should have included even more.  All we could write were a few brief lines.  "Merry Christmas!  Love, Us".

As I drove, listening to Lisa, I thought about how little that is.  And about how many more we were leaving out.  All the same, it was one of the few things we could do, it took Lisa a lot of effort and was so rewarding.  The only other thing we've really been able to do is for a neighbor, T. who doesn't eat as well as he ought.  Every so often, Lisa makes a tomatillo salsa and we bring him some because he loves it.  It's the smallest thing but it can mean so much.

It made me think about my Uncle's brother, G., who has Down Syndrome.  Every Christmas for as long as I can remember, he'd politely open his presents which were always pens and the notepads he so loved "writing" in.  But the best part for him is passing out the presents - that's when his eyes sparkle with joy.

On Monday afternoon we went to the ER.  We had packed for who-knew-how-long a stay in the hospital - every time we'd been to the ER in the past she'd been admitted.  Lisa had a 100.9 fever and with a very low white blood cell count, her doctor thought we needed to go to the ER for more blood tests.  Her white blood cell count was still the same old low it's been for months now so they percribed an antiboitic just in case and let us go home that evening.  

This year, we have so little to give, not just in gifts, but in time, presence and energy as well.  And medically, there's nothing anyone can give Lisa that will change much at this point.  So we're just plain grateful for our friends and the ability to go home and have a normal day.

That's really the best Christmas present ever.  No one on earth can give that to you.  But it's something we're just eternally grateful for.  Christmas passes quickly - savor every day.

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...

I have been having the week of all weeks with my MOM.  I'm so glad she's here to help out, and it's been so healing to have her all to myself for the week.  She's been able to drive me to all of my appointments and take me on all my errands, not to mention indulge me in a little retail therapy, all while Boyfriend can stay home and get some work done.  As my full-time caretaker, he's not had much opportunity for anything work  or self-related in a LONG time.  So throw some intense mountain bike rides and extra sleep in with the web application work he so loves (and needs to do!) while Mom and I are off doing our own thing, and he's been a VERY. HAPPY. BOYFRIEND.

So here's the health update:

Treatment is still going well, no major increase in side effects to report from the last two weeks.  Still too skinny and finding it hard to sleep at night with all the steroids, but I just try to take lots of breaks, wind down with my Tulsi Tea, and go to be early.  If I'm up at dawn, I'm up at dawn.  More meditating time.

Despite my efforts to keep my immune system strong, and I'm not one to get sick much anyway, I'm fighting a sinus cold and laryngitis.  Although all the gabbing with Mom is certainly a contributing factor to my voice problem...  And I'd like to think that some of the yuckiness that is sliding out of my nose and eyes is bits of tuber running for it's life!  ;-D

And it's official: the hair is coming out.  In clumps.  But only on the right side.  So the plan is to take it all off, eventually, maybe by the end of the week.  Lots of hats, woo hoo!  Boyfriend's excited, 'cause now we'll have the same hair-do!