A New Dawn Unfolds
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 Six-Month Mark: On The Fastrack
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!
I Must Be Doing Something Right
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.
On Our Way to San Jose
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.
A Little Help From My Friends.
You may recall from my previous post that in addition to all that empowerment I recieved at my last doctor appointment, I also received an increased dosage of my anti-seizure drug, Keppra. At the time of the instruction to increase my dosage by 50%, I thought, "Oh, so I'll be a little more tired, a little more out of it - it's already in my system. No prob."
WRONG! Business as usual for a couple of days and I found myself barely able to move from one horizontal surface in my 900 square-foot house to another.
I used to call it the crazy medicine, but it's turned MEAN. It's certainly doing what it's supposed to be doing - I've been seizure-free for over two weeks.
First came the physical fatigue. Then the hysterical crying. Shakiness. Dizzy spells. Soon I was fighting relentless headaches that had me convinced that my head was going to explode. Blood and brains everywhere, all Quentin Tarantino-style. Really.
My efforts to meditate the pain away, previously successful, were completely useless, nausea-inducing and painfully frustrating. Boyfriend was at a horrified loss, and I didn't know how to express the pain I was in, but to cry harder. I either slept all day and night, or couldn't quiet my mind enough to sleep for a day or two.
Before I realized what was happening, I had no control of my own mind. "That's below the belt, Keppra."
So back to that previous post. The one in which I claimed to have recieved an extra-large helping of empowerment, no extra charge. Shortly after I hit "publish" I must have reached my validation-via-internet quota or something, because my brain turned into a gooey marshmallow and began to ooze out my right ear. And Girlbert and her empowerment were never seen or heard from again.
But WAIT - that's not how the story ends! While I may not have been able to put a sentence together for a while now, much less come up with a witty, insightful post, I am trying to process and document what just happened, if only to truly acknowledge the lesson for myself. So if you will just humor me, I might try to do that right now, albeit with a marshmallow for a brain.
This week made me realize that I've been going about my quest to "Heal Thyself" from not exactly the correct angle. My outlook has been all skewed, so to speak. (My high school geometry teacher, Mr. James, would be sooo proud.) All the health food and juice, kicking my own ass into action and positivity. Boyfriend's repeated suggestions to rest, meditate, STOP WORKING - ignored. "You need to work on your mind, or it doesn't matter how healthy you eat." But I was completely missing the forest for the trees.
Not letting anybody help me, because I was responsible for healing myself. And I would be calling the shots. Seeing as how it was my brain tumor and all. Each good day I had I'd think, "Look at me, I'm going to go in for my next MRI and this stupid tumor will be gone. I'll show them - I don't need ANYBODY." And then the universe uses that moment to show me otherwise.
You think you don't need anybody, huh? You think you can do it all by yourself? How about I take away your rationality, bodily function and will to live for a minute. How about then? Bet you need some help now!
The universe always wins. Because I wouldn't have survived the last week (much less the last year) without relying heavily on people who love me and want to help me. So when Boyfriend picked up the inconsolable, lifeless shell of my former, fabulous self off the floor and set it on the couch, emergency-dialed my spiritual guide/channel/healer for a long-distance healing and handed me the phone, I knew better than to resist.
"Hey darlin', what's going on?" Tears of relief ran down my face at the sound of her voice, and before I could reply, she began, "Lose the guilt - everybody WANTS to help you. You're staying on the planet, in your body, because you have a lot to offer in return."
An hour later, I saw a glimpse of myself in the mirror for the first time in over a week as I brushed my teeth. Then I went to bed and slept for 13 hours.
The next morning morning I woke with a headache, but I meditatively karate-chopped it, and it cowered in the corner for the rest of the day. That's right! I might kick you again!
Lesson in progress: I'm nobody without the amazing people I surround myself with. By opening myself to this lesson, I have regained the ability to meditate. I have reopened myself to the endless supply of love, support and positive energy and am realizing how much more power I have to heal. Opportunities to give back are currently presenting themselves as I can handle them, and it feels so good to give!
I have my next two-month MRI tomorrow morning (Tuesday, 9/8/09). I am open to receiving positive, tumor-shriveling energy, starting right now. I can't wait for the amazing results, and I will certainly let you know how hard my (Ninja) Neurologist's jaw hits the floor.
Hello Keppra - I see you, and I plan to match your merciless side affects with kung fu meditation and a little help from my friends. You, too, little tumor.
Yesterday I was turned away from my second two-month MRI because of a miscommunication between doctors, staff and the myriad of patient financial "assistance" programs involved. THE GOOD NEWS IS: I have received authorization for the MRI, and have been rescheduled for 5:30pm this evening - so BONUS tumor-shrinking time for me! I should still be able to have my MRI in hand for the appointment with my Ninja Neurologist tomorrow, so I'll keep you posted on the good news (and jaw-dropping!).
