boyfriend

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!

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!

Birthday: The Extended Version
My Boyfriend is Better
This Probably Ruins All Future Birthdays

Lily Tomlin was scheduled to do a couple of shows in Santa Barbara the weekend after my diagnosis in May, but they were cancelled due to the Jesusita Fire that was raging through town.  Shortly after, I noticed that the shows were rescheduled for October on my birthday weekend, and I thought How fun would that be?  I mean, she's an ICON, I've always found her hysterically funny and we do share a last name.  Despite the extravagence of buying tickets to go see a major comic in a Santa Barbara venue (Ha!  We're POOR, remember?), I may have mentioned a time or SEVEN that I thought that'd be a fun thing to do.  Without any real seriousness.

So I've already told you about my birthday.  Low key, treatment, doctor appointments, cupcakes, plenty to do, thrilled at the idea of an early evening of homemade pizza and a movie with Boyfriend.  It was perfect.

But upon waking the day after my birthday, Boyfriend informed me that there would be an extended birthday surprise for me in the evening, so we would need to stay on schedule to be back in Santa Barbara, fed, rested and gussied for a bit of a late evening.  "The timing just didn't work out for yesterday, I'm taking you to a surprise tonight."  Huh.  No one had ever surprised me with anything for my birthday before.  Really.  How curious and exciting!

So I stayed on schedule, stayed low-key, took my meds when I was supposed to, and we were headed back to Santa Barbara in dressy duds at 6:30 for an unknown, surprise something.  We parked in City Lot #9, and Boyfriend led me, teetering in heels to the Lobero Theater.

Audible gasp. "HERE?  No, no, no..."  I stopped and turned to see his spreading grin at my realization.  "HOW did you do this?  This is expensive..."
"I made a friend at the theater, M, explained the situation, and she got us in."  He'd used my brain cancer, birthday and my Tomlin cards.  How many times does one have three cards for ONE situation?  A genius, that guy.  "And we're going to the pre-show party, too, so let's keep moving..."

I got to meet M and the executive staff at the Lobero to express my thanks.  So gracious.  One of the staff members even informed me that I could write a question for Ms. Tomlin on a card, and she may answer it during her Q&A at the end of the show.  My question?  Would you pose for a picture with a fellow Tomlin?

Why not shoot for the moon, right?  I mean, I was already most of the way there...

So the show was non-stop hysteria for over two hours.  I only had one mild seizure and got preoccupied with my meds once, then sailed smoothly to the end with tears of laughter and joy running down my cheeks.  Have I over-used the word gratitude yet? Yeah, probably, but don't expect it to stop anytime soon...

Suddenly the show was over, and Q&A time had arrived.  She stood at center of stage with a handful of question cards.  "Oh, Lisa - is this true?  Where's Lisa Tomlin?  Another Tomlin!  Wow!  I don't meet many of you, just once in a while..."  She was speaking to all of us, standing in ovation, but I waved my hands and said, "I'm Lisa Tomlin!"  a crazy grin spreading taking over my entire face.   WOW.

So after the performance was complete, I was graciously ushered to the green room and did INDEED get my photo taken with the lovlier, wittier Tomlin.  We chatted about the Tomlin name, and she reinterated that she really didn't meet many of us, but she was always interested in where we came from.   I even made her giggle when I told her my Tomlin parents and little brother were GOING. TO. FALL. ON. THE. FLOOR. when I told them about my evening.  I even got a Tomlin hug.  Amazing.

Boyfriend is going to have a hard time topping this one.

And I thought the orange and pink flower arrangement from my gay friends was over-the-top!

A lot has happened!  And I intended to write everday, but I've been allowing Boyfriend to step in with major updates, because we're on the low-stress-for-Girlbert-program.  And I've been trying to be a good girl, despite some peaking (drug-induced) creative and physical energy.

So this is long-winded, but hopefully broken down into enough chunks that you can all manage, whether you choose to skim it over or swallow it whole.  I did attempt to put in some kind of order of importance...

Medi-Cal Continues To Give Me Seizures
    Boyfriend touched on this in his birthday post from yesterday, but after 7 months of hoops with Medi-Cal, I have been informed of denial due to a technicality.  My case has been closed, and I will have to appeal the denial, as well as REAPPLY and start the process over to get the ball rolling back in my court again.  7 months, people.  And this is after my Ninja Neurologist got me on the fast-track to approval with a letter stating that I may not be alive in a year without treatment.  Unbelievable, but as always, we'll deal.  We're putting our heads down with some social workers and lawyer friends, and we'll get it turned around.  The squeaky wheel plan continues.

Treatment Is Going Well
I am really happy to report that two weeks into chemo and radiation, I've had no debilitating side effects.  All the medication I'm on has side effects, don't get me wrong, but I'm managing very well with rest, good food, a regular schedule, and loads and loads of meditation to keep my mind in order.  My docs warned me that the irritation of radiation would cause some more swelling and sure enough, my seizures have increased a bit - I have one or two mild, conscious episodes a day, but only one like the episode Boyfriend wrote about on Friday, and nothing like that since.  I took my activity level down a notch (steriods make me feel like Superwoman!) after Friday, and my Ninja Nuerologist tweaked my seizure meds and added a sedative/anti-seizure drug for me to take at night to sleep.  

My docs have all warned me that the further I get into radiation, the more side effects I may experience, as the tuber dies off (ba-bye little tuber!), and my brain may become more irritated throughout.  But we're all prepared to deal - I'll get to take more naps, maybe!

The oral chemo is going really smoothly.  The anti-nasuea drug seems to be doing the trick, not to mention I take my one, oral dose right before bed on an empty stomach.  My only complaint is that one of the major side effects is, of course, CONSTIPATION.  So despite the fact we're still pretty high raw, juicing like fiends, and I'm downing water like it's going out of style, hello hemmoroids!  Good times, but not that I don't have the experience to handle it.  So back to Alice I'll go, as necessary.  I'll need a good cleanse when this is all over, anyway.

So just how is Au-Naturale-Girlbert and her complementary treatment plan really feel about all the drugs and western medicine?  That it's the right thing for my body, right now.  I'm grateful for it, and know this is the route I need to take to heal my body, and ELIMINATE THE TUBER.  But I'm asking LOTS of questions.  Every side effect, every medication and dosage change.  And my doctors have thoroughly explained to me the necessity and purpose of each drug so that I understand the benefits for any detriments.  My comfort level with all of it is quite high.  My only concern is that my mind stay sharp and functional, and hasn't seemed to be an issue with all the increased spiritual practice.  My mind is as clear and grounded as it's ever been, despite all the drugs.  I couldn't feel more blessed.

About My Weight
Many of you have asked if I'm eating.  Yeah, I'm skinny.  Too skinny.  Skinnier than I've ever been, but I'm ravenous!  But I agree that checking in at 5'8" and under 120 pounds is a bit disconcerting (haven't weighed anywhere near that since MIDDLE school!), so I asked Uber-Oncologist Dr. G, about it before I even began treatment.
"I have one more question."  At 6pm, the tail-end of our squeezed-in appointment to get some questions answered before I begain treatmment the following week.
"Sure - what's that?"  He turned toward me, from the computer monitor full of my scans and charts.
"I've lost a lot of weight - more than 15 pounds in a couple of months - is that the steroid making my metabolism go wild or something?  I though steoids were supposed to make me gain wight.  My energy has been really high, and I know they have that effect, too."
"How's your appetite?"
"I've been ravenous."
"Have you been thirsty?  Having to urinate a lot?"
"Really thirsty and I have to pee all the time."
"Hmm.  Your blood sugar was pretty high in the hospital," he referred to his computer screen for reference, "126.  Steroids can cause diabetes."
The tears came instantly.  "That's in my family history," I whimpered.  The D-word.  After watching many family members struggle with diabetes, my ultimate health goal had been to keep myself from ever having to hear a doctor tell me I had the D-word.  Cancer schmancer.
Dr. G shook his head reassuringly.  "Dont worry - medically-induced diabetes is totally reversible.  But we'll ckeck your blood sugar in your blood tests anyway to make sure."
My blood test the next day showed my blood sugar back to normal.  Whew.

In the meantime, I shared this story with my brother, who shares my ultimate health goal of avoiding the D-diagnosis.
Perhaps channeling our Grandma T's (sometimes inappropriate) sense of humor, he exclaimed, "Oh my - 118 pounds?  Brain cancer is like the best weight loss program ever!"

And we laughed, because we're Tomlins.

About That Trip Up North...
Boyfriend already touched on this in his earlier post, and I've been meaning to, oh, but for the time of really doing the words justice!

Here's the bomb: Following my treatment at the end of November, we'll be moving up to Marin County, CA - the lovely town of Fairfax, to be precise.

So you remember that trip, over a month ago, now?  I experienced a profound shift while visiting our dear friends in Fairfax, and sensed an overwhelming connection to the place as a healing center.  A mecca, even.  Upon driving into town the first time, we came upon healing center after local market, after meditation retreat center after organic restaurant after holistic health care office, and my only thought was that this was the place for me.  Seem abrupt?  All I can say is that it immediately resonated with me at such a high level, it couldn't be ignored, and the 7 days we spent there only confirmed what I knew in that initial moment.  Boyfriend and I both experienced a huge shift in our relationship during our stay, and we're not attributing that to any accident.  We also deepened our relationship with the dear friends who put us up for the week, and can hardly wait to live in their community.  Not to mention a much better proximity to a major University Hospital, more dear friends, and the Neuro-Accupuncturist I will continue to see throughout my healing journey.  The utmost importance has been placed on my health, increased autonomy, adjacency to nature, proximity and access to like-minded, spirit-driven people, continued healing,  and happiness.

Friends and Family Visiting
I've just wrapped up well-timed visits from friends and family this week.  A great girlfriend from Wisconsin was here over the weekend with her little boy, and such a treat to spend time with them - it'd been over a year since I'd seen her last.  The magic of spending time with children - very healing.  Then my baby cousin (okay, so she's 24!), whom I haven't seen for over 12 years, and her boyfriend stayed with us Wednesday night, and I couldn't be more thrilled to see her and connect with out-of-touch family at this time in my life.  The universe continues to astound...

Relief Is On The Way
In the form of more family coming in to help out, as Boyfriend and I continue to manage schedules, work, and appointments.  We couldn't be more thrilled that my mom will be here next Tuesday for eight days to help out with driving, erranding, cooking and whatever.  Not too mention lots of hugs and love.  Just the relief of not having to drive me to treatment everyday will free up Boyfriend's schedule immensely to get some much needed work done, which will help our financial situation tremendously.  Then Boyfriend's parents will be coming on November 4th for about two weeks, and we're are thrilled for the company and help. They have lots of friends in CA, too, to they're looking at it as a double treat.  Can't wait to see you all.  Thank you, thank you, thank you.

That about wraps it up!
Please keep in mind that I share my journey on this blog because I believe it is a powerful tool to help me heal.  Your traffic, you comments, your positive energy - I FEEL all of it, and be assured that what you put out into the universe in a loving way will come back to you in amazing and profound ways.  So leave your love here, and you'll heal yourself...

I'd like to share a letter written by Boyfriend yesterday to friends and family, summing up his thoughts on our week.

All,

We just got home from three days in the hospital at about 6pm this evening.  Lisa's left side is still somewhat tingly and she only had one painful episode on the way home.  Otherwise, she's mostly smiley, a little scared, rested and yet still tired, excited about kicking the tumor's butt, etc.

The doctors' consensus is that she needs treatment very soon.  That would most likely be "conformal targeted radiation" (which targets the tumor) and oral chemo which should keep whatever is left of it from growing.  We meet with the radiation oncologists on Tues for radiation planning and could start the following week (to get in 5 days of chemo before starting radiation).  The side effects are a bit less than the high risk of stroke and significant paralysis that surgery could cause.

Currently, she's on a high dose of anti-seizure meds and on the maximum dose of steroid to keep the swelling in her brain down.  More anti-seizure meds won't really help because it's not addressing the underlying problem which is the tumor and swelling.  And she can only take the steroid for another week or two.  The problem is the tumor basically grows into whatever space it's given when you take away the swelling.  So needing "treatment very soon" means as *now*.

We are still waiting on Medi-Cal but they should have a decision in the next few days.  However, the SB Cancer Center has accepted her in their charity program (although we're not sure what that normally covers).  When we shared that concern with the SBCC doctor his response was "We're going to treat you.  You need it now and we can work everything out later."

As I write this I can't help being overwhelmed by the kindness, compassion, and effort that everyone has given.  Every doctor, nurse, social worker, housekeeping, - EVERYONE - at Cottage and the Cancer Center is in her corner in a way that is just plain overwhelming.

It's doctors coming to her room at 8pm after what can only be a very long day and spending hours answering our questions.  It's nurses bringing her a green apple long after food service had closed just because it tasted good to her.  It's nurses we met months ago the first time around coming in to hug us and wish her well.  It's the countless people we've never met who've worked long hours and jumped through big hoops to get her Medi-Cal application fast-tracked.  I can not begin to express how thankful we are to everyone at Cottage Hospital and the SB Cancer Center.

The same goes for our friends.  Many have offered to help in whatever way we need.  Everyone sends love and positive energy.  One gave us a big chunk of money; many others cooked or shared a meal.  Another pulled a favor so we could see one of the leading neuro-surgeons in the country gratis.  Yet we've not had the opportunities to take many others up on their offers to help.  Again, we can not begin to express what this means to us or our gratitude.

We feel blessed to have such friends and such institutions as the Cottage Hospital and the Santa Barbara Cancer Center.  While we'd never wish this on anyone, we feel blessed ourselves to be forced to go through it because it solidifies what we believe in; what we feel worth fighting for and how we want to fight it; it defines the meaning of our relationship and our friendships both old and new.  It forces us in the most brutal way to take every moment as a gift.  That is why it is called "present".

Love,
Eric & Lisa

So good to be home.  My own shower.  My own bed.  My juicer.  And when Truly isn't sitting directly on my body, I find her purposefully draped over my hospital bag, opening an eye as if to say, "Relax.  You're soooo not going anywhere."  So, ahhhh...HOME.

Not that the hospital stay was prison in any way.  Once I was there, a sense of peace and meaning settled over me as I was forced to do nothing but SIT in my hospital bed and soak up a steady supply of information, care, comfort and support, like a fresh sponge.  I maintained an extremely clear head whilst resting in my hospital bed, and I was able to absorb and retain the wealth of what could have been overwhelming information with ease.

I am continuing to experience a shift in clarity that is making more aware of my wants and needs than I have ever felt.  In my entire lifetime.   Not just that, but my ability to express them is developing at a rapid pace, and I am enveloped in a certainty that I've never known.  I know what I need, and how to ask for it!  I am more comfortable in my own skin than I ever though was possible.  Exhilarating.  

Boyfriend is over the moon at my growing ability to communicate, and our relationship has evolved to a new level entirely.  I turned to him at one point early this week and cried, "I just want to be normal - for US."  He hugged me close and said, "Normal's overrated - you're extraordinary."  It helps to have extraordinary support.  For all the guilt I've felt in the recent past over becoming/being a burden, I have a  renewed clarity that he's by my side for a reason, we're in this together, and now that my ability to express my needs has reached this level, things will continue be so much smoother between us.

A brief timeline on my hospital stay:

Monday: Arrived at the Cottage Hospital ER at nearly 7 in the evening after persistent seizure symptoms wouldn't subside.  Check in, examination, and finding me a room took several hours - it was after 2am before I was settled and able to think about sleep.

Tuesday: I got very little sleep.  I was fatigued and tired most of the day - the tingling and discomfort on my left side rose to seizure-like crescendoes all day, sometimes as often several times an hour.  My Ninja Neurologist was there, providing info, coordinating meetings with other doctors, working with the social worker on Medi-Cal.  Can't say enough about that man.  I was happy to sit back and let everybody work while I struggled with the ongoing fatigue and discomfort.

Wednesday: There was no Pictionary-style pad and easel, laser pointers or slideshow projectors available for my consult with my oncologist, the fabulous Dr. G, but he was kind enough to do some exaggeratively helpful doodling on paper to depict just what he sees on the MRI and explain just what is happening within the limited confines of my skull and why my body is reacting the way she is.  As he explained it, "the tumor appears to be growing from the inside, causing swelling, and an increase in the shift of your brain's midline, which is putting pressure on your brain and causing the increased symptoms."  He also used words like herniation to explain why there's just no more wiggle room for that damn tumor.  And why can't the symptoms continue to be managed with more medication, until we get on with treatment?  "The longer you have the steroid keeping your swelling down, the more room you're actually making for the tumor to possibly get MORE aggressive."  Yikes.  "Nevermind the long-term affects the steroids have on your body anyway, its best to use them only when absolutely necessary.  And you've already been on the steroid almost two weeks."  We wound up our meeting with a discussion on treatment options, Dr. G running down the hallway of the hospital to go print some clinical studies off WebMD for me to look over.  He stressed the effectiveness of a combined chemo-radiation treatment, usually a 42-day series, and made a call to the radiation oncolologist to have him come up and see me the next day.  He was with us from 8pm to past 9 o'clock.  Extraordinary.

Thursday: I met with my new radation oncologist, Dr. S, about radiation treatment.  He also answered all of my questions with the utmost compassion, thoughtfully explaining the differences between stereotactic radiotherapy, conformal radiotherapy, and whole brain radiation.  All terms that have been strewn around, but not fully understood by myself.  Until now.  I have a radation planning session with Dr. S at the Cancer Center of Santa Barbara on Tuesday to discuss details of treatment.  Lots more to learn, and he continually emphasized, "I expect to have to answer many questions twice, explain things many times, so just keep asking.  It's a lot to absorb and take in, don't worry."  I'm not.

Yesterday I spoke with my brother for the first time this week, and his ability to state the obvious always refreshes my perspective.  I cried, "I just didn't think this scary, chemo-radiation route was for me..."
"Well that tumor's not for you, either, so you need to get it out of there!  It's time for you to kick it out!  There's no free rent in Tomlin heads!"
The tears of sadness quickly turned tears of laughter.  I LOVE YOU, Little Brother.

I was discharged from the hospital yesterday afternoon.  The numbness and tingling had been to a consistently LOW level all day and any surges that came up would be gone within a minute or so.  I had met with all the doctors I needed, appointments for next week have been made, and I'm comfortable managing the minimal symptoms on my own with rest and my regular medications.  The discharge process was a bit slow, and I was ready to go, so we were actually waiting at the door of my room when the discharge escort came up for me.  She had a wheelchair.  

"I don't need a ride," I smiled at her.  I was thinking I might like the walk.
"Oh, it's SOP."
"What does that mean?"
"Standard Operating Procedure."  She looked at me quizically.
Boyfriend chimed in, "Lisa wouldn't know what that means - she doesn't do anything SOP."
"Please sit down."  I did, and she wheeled me all the way to the hospital's front door. 

The walk to the car was magnificent.

So here I am, six months to the week since my diagnosis, and the "wait and see" approach has clearly come to a grinding halt. The tuber is done waiting.  My brain, my body, my mind know that something must be done.  

To get you caught up:

We returned home from our trip up north on Saturday evening.  I have so much to report about my healing, transformative, cathartic week in the San Fransisco area, but that will have to wait for now.  I experienced a huge shift while up there, with my tumor behaving nicely, and my body handled the travel, neuro-acupuntcture and visiting with friends with no noticible strain or symptoms.

Until Monday.  About midday, I felt a "mini-seizure" (my word for concsious seizure - pins/needles on my left side, ringing ears, metallic taste, etc.) coming on, so I thought I would rest and meditate it away.  Normally, 2-3 minutes of meditation and relaxation would take care of it, and it'd be gone.  But the discomfort lasted a few hours, and Boyfriend and I put a call into the ninja neurologist.  He suggested that we go pick up a prescription for a sedative to stop the seizure, and if no relief in an hour, advised that we go the the hospital for help.  

I spent Monday night at Santa Barbara's magnificent Cottage Hospital, not willing to mess around with the seizure that wouldn't go away.  My ninja neurologist, oncolologist, other doctors, Boyfriend and I are all working on a plan make it CLEAR to Medi-Cal that I need to pursue treatment NOW.  Not whenever they feel like finishing my paperwork and approving me, but NOW.  Strongly worded letters have been written, we're expecting a response in a few days to a week.  Having me in the hospital under observation and treatment solidifies the urgency of the situation, should any further questions come up (for poor, slow-on-the-uptake Medi-Cal) with regards to the current state of my health.

So that's the short version.  I don't have my head even remotely wrapped around treatment options.  When I do, I'm sure it will involve flow charts, calendars, and a crazy pictionary-style easel, and there's still a lot of data to collect.  My next few baby steps are focused on getting Medi-Cal approval so that I can get in with some neuro-surgeons, neuro-oncologists, and the like, who have seen cases similiar to my own, and will be better able to advise my on my Western options.  Complementary therapies remain part of the long-term plan and I will continue the neuro-acupuncture and energy work.  I am determined to keep my body and mind as healthy and strong as possible through meditation and nutrition.

Currently the tingles and spasms are still intermittent, so I'll stay put here at Cottage until I'm consistently comfortable - the forced rest and care are certainly good for me, and no better place than my hospital bed to wait out the word on Medi-Cal and weigh the options my various local doctors have to present.

Boyfriend is right by my side, and has been, but for the runs home to get supplies (a girl's gotta have her good shampoo and face cream!) and give Truly some kibble and a snuggle.  So we wait, with smiles, love and hope.  I'll keep you posted on any changes, I'm hoping for a powerful update soon.  As always, positive, healing light and energy help, if you feel inclined to share.  Love to you all!