boyfriend

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!

Okay, maybe I can come close to doing it justice. 

We haven't left for San Jose, but tomorrow morning looks like a sure bet. 

We spent most of the day catching up from the week of certain uncertainty, fielding phone calls from doctors, social workers, healers, and patient "assistance" case workers, faxing this form, filling out that other one.  "So Lisa, have you signed form XR-87?"  WTF?

Today is my Love's birthday, and the only thing in the world that I wanted was for him was just ONE stress-free day, particularly after the series of wringers we've been through since April.  Tell the universe your plans...

So after the last phone call/organization attempt ended in tears, Boyfriend did what no man should have to:  he volunteered to drop everything, at 3:00 in the afternoon, to take a heap of paperwork over to Medi-Cal, the never-satisfied, clusterfuck of a patient financial assistance program that closes at 4:00pm, and holds my very life, my very future, in their hands.  And by drop everything, I mean laundry, packing, juicing, cleaning, and did-I-mention-it's-his-effing-birthday?  Yeah, probably.  All so I could finish up what I needed to with the organizing/packing/cleaning of my half of the equation, so that we can REALLY drive up the coast in the morning.

He just called.  He's at our favorite market, the Isla Vista Co-Op right now, picking himself up a delicious birthday dinner and raw, organic coconut cream cake (for which I have a candle!).  Are you picturing him with a mask and a cape yet?

I am.  Better hop in the shower and put on a cute dress!

Time to rise to the occasion.  And the Boyfriend.

Ahh, gratitude and reason - there you are! 

Silly Girlbert.  I'm the luckiest girl in the world.

There was no jaw-dropping.  Unless you count mine.

My Ninja Neurologist was straight to the point: "I saw your MRI.  It looks like the tumor has gotten bigger.  I don't think those were side effects of the medication that you were experiencing.  I think it's the tumor causing all the headaches and the pain.  You're going to need to do something soon, or you could die of brain cancer."

For all my disappointment, I smiled and said, "I'm not going to die of brain cancer." 

"Okay."  He smiled back, but there was no mistaking the worry on his face. "So get on it."

For as brave as I wanted the world to think I was, I just wanted to cry.

But an hour's worth of just-the-facts-ma'am, yet empathetic, conversation with Ninja Neurologist and Superhero-Boyfriend gave me the kick in the ass that I was probably needing. 

Boyfriend and I had both been certain that the evil Keppra was the cause of horrific previous two weeks, before two, completely unexpected, mild seizures on Wednesday (just when I was feeling better!) introduced a shadow of doubt.  But now we are both with the good doctor, my Ninja Neurologist in shining armour.  The evil brain tumor must be dealt with.  And the sooner, the better.

A pre-emptive plan was established: My Ninja would do what was necessary to make a another, updated referral to a neuro-oncologist at UCLA.  Then he'd put in a request for authorizaion with the various patient financial assistance programs still determining my eligibility and tfighting over who's problem I was.  I would have to resume my role as the squeaky-wheel-from-hell-brain-cancer-chick, which involved tearfully explaining the urgency of my situation to a number of people who really don't care.  Not that they could speed up the process, anyway.

My Swami Social Worker has been brought up to date and is all over assisting me with translate the process into girl-with-brain-tumor-speak - seriously, it would hardly be possible for a person with a fully functioning brain to do this.

A call from my uber-oncologist this morning confirmed by Ninja's take on the MRI.  "I think its time to start pursuing treatment." 

That's it - Girlbert is officially with the majority of opinions involved.  Weird.  But so good to have a team you really trust behind you.

Today is Love-of-my-Life-Superhero-Boyfriend's birthday.  I can't possibly do my feelings for him justice, much less provide you with more detail regarding yesterday's events, considering my current state of mind and the fact that we're leaving in just a few short hours for a drive up the coast to San Jose and on to San Fransisco, for a dual-purpose road trip.  I will be seing a Neuro-Acupuncturist for a series of treatments while we're up there, and we'll be relaxing with friends and nature to celebrate and remind ourselves of the beautiful life we have together. 

So despite the fact that today is his birthday, I'm going to let Boyfriend explain further, taken from an email he wrote to family and friends earlier today:

MRI "take 2" went well but Lisa had a small seizure afterward in the lobby.  She still wanted to meet friends she'd not seen in months so after a quiet dinner we met them after their Wed. night racing at the Santa Barbara Yach Club.  She had another seizure at the club.

Her neurologist explained to us yesterday that the MRI shows a slight increase in size of the tumor.  It's "within the standard error" of the machine so all we can do is read between the lines.  But quite clearly the tumor hasn't shrunk and there's swelling as well that has been the cause of both seizures, headaches, dizziness etc.  He put her on two weeks of steroids which should reduce the swelling and another increase of the anti-seizure med. It's not the best of news but it is not the worst either.  It is most certainly a kick in the ass which she needed.

She is a bit blue I think because of the uncertainties.  All her new symptoms coincided with an increase in her meds.  And with how wacked out they make her and how strongly her oncologist feels about stress affecting her brain physiology, that uncertainty certainly seems plausible.

Then there's potential new plant based 'chemo' agents in clinical trials... But which phase, who to talk to ...  Up until yesterday we weren't even sure what this week would bring.  So we're both embracing Uncertainty.

As I write this, she is speaking with a long time friend and spiritual healer.  That's a side she feels she's been neglecting.  And we're leaving today for San Jose for neuro-acupuncture and Chinese herbs.  (It was only two years ago that Western medicine found that licorice, an ancient Chinese cancer treatment actually *does* have tumor fighting properties.)  Lots to do.

Again, thanks for the support.

Try as I might, it's impossible to stay calm and relaxed if my partner is anything but.

Boyfriend is struggling to keep his head above water as I've cut back on my work-load (read: he's doing it ALL - did I mention he's a superhero?) He's been working increasingly long hours, juggling our little shoestring-operation by himself as we take on our very first paying web clients.  Yesterday, in the heat of some kind of anxiety-fueled frustration, he looked at me and said, "You're just going to have to get it together, because we have to pay our bills."  

Note to anyone who ever has to live with someone who has a large tumor in the emotional center of her brain, is on anti-seizure medication that sometimes heightens, or then again sometimes dulls, her senses, and never has never been good with stress, anyway: NEVER tell her that she's "just going to have to get it together." Those words actually cause her brain to go numb, if not melt into a puddle, and greatly increase her risk of seizure.  

And it was a doozy.  As I was lying in bed, going over the day's many low points, internally wording comebacks at everyone with whom I've ever been pissed, wishing Boyfriend would just LAY off, but feeling terribly GUILTY that I'm no help on our quest for financial stability WHATSOEVER...

Shit.  I'm having a seizure.  I've given myself a fucking seizure.  "Honey, wake up - I'm having a seizure."

Later, I asked him how long it lasted.  He thought one to two minutes, but it felt like twenty.  Stronger than the last one, and I hadn't even missed any medication.  Double shit.

It just so happened that I had an appointment with my neurologist today.  I was unreasonably nervous - I hadn't done any of the "homework" he'd given me since my last appointment, six weeks ago: check out treatment options and alternative therapies, get an appointment with a neuro-oncologist for a second opinion.  And now I was going to have to tell him that I'd had not one, but two seizures since I saw him last.  I felt like the bad kid, having to tell my teacher "the dog ate my homework".  Just lame.  I pictured my Ninja Neurologist, all disappointed, writing me off, for not doing my part in my own treatment.  I pictured myself, begging him not to give up on me.  Making 'excuses' for myself, like, "I had so much paperwork to fill out, we have rent and bills to pay, I did a lot of research on raw foods, completely changed my diet, and am working on a divorce-related, patient-financial-assistance stumbling block!  Did I mention all the county and state patient assistance paperwork?  Wait!  Come back!"

Was he disappointed?  Maybe a little.  Did he threaten to write me off?  Nope.  Just offered ideas, and words of encouragement, and emphasized the importance of pursuing treatment options.  He recognized the validity of my brain-cancer-damsel-in-distress, and swooped to the rescue with rapid-fire solutions:

"The patient assistance programs are so frustrating and slow.  I'm going to have you to talk to Swami, one of the social workers here - he's really good - because this needs to change.  I can see that you've done all you can and you're not getting anywhere.  We need to get you scanned again, but I don't want to order an MRI until you have some financial aid lined up, because I don't want to keep racking up bills for you to worry about.  If you're having seizures, that's not good.  I'd like to up your dosage a bit - from two pills a day to three."  By the time we got to the meds, I was relieved - man, do I hate those damn seizures! 

Once I figured out he really was in my corner (AGAIN!  Why don't I get that?), kicking some brain tumor and state-funding ass on my behalf, relief washed over me like a delicious shower in a world with an endless supply of water.

So my Ninja Neurologist got me all lined up to talk to my new Swami Social Worker, who was nothing short of amazing.  He's the first social worker (in a long list) I've met with who's been empathetic, but savvy and insightful.  I'm smiling right now as I think about his encouraging, knowing grin.  He actually told me, "You've done everything you can do and should do.  You're way ahead of the game - but it's an undignified process.  In fact you're standing at the crux of what's happening politically and socially in this country right now.  It's ridiculous.  It's disgraceful.  And you're a living, breathing example of why it needs to change."

Hello, Empowerment.  Nice to meet you.

My grandma had a screened porch when I was a kid - nothing could touch the fabulousness of being outside, view of the lush, midwestern backyard, without the pesty mosquitoes bothering us as we ate, talked, relaxed.   I haven't been blessed enough to come across a screened porch many times since, much less live somewhere that had one.  I made several attempts to simulate such a feature on the back deck of the house I lived in in Colorado, only to have the great winds of the front range destroy gazebo after gazebo.

Boyfriend and I live in a cabin that boasts the screened porch of all screened porches, to which I escape daily to birdwatch, take a nap or read my latest cancer book or raw food manual.  We eat meals and drink tea at our little cafe table. I've moved my herbs here, out of harm's way (turkeys!), now that the indigenous vegetation has become so scarce.  When we're feeling romantic, (who, us?) we both fit on the built-in daybed for a cuddle and the opposite end has a comfy swing.  A trunk and two chairs stand ready for a game of dominoes, one of our favorite after-dinner, wind-down evening activities. It's the most amazing haven for together time or alone time, and it's been quite the luxury to have friends and neighbors dine or hang out on our 'patio' too.

Until yesterday's ash storm, brought to the surrounding area by the La Brea wildfire raging east of Santa Maria, it was as clean and cozy as this picture depicts.  I need to find a spot on the to-do list for some housecleaning...

Where's your haven?