1am, Friday
About 1am Friday morning, Lisa woke me with a strong, tingling seizure originating in her left knee which was sore from a short walk earlier in the week. "Ok, let's meditate through it and make it go away." She did and it went away in a minute or so.
1:04 am: Lisa began convulsing in an unconscious seizure. I reached for the phone, checked the time, and dialed 911. I apparently mis-dialed and the call didn't go through. And in that moment I decided that I'd better talk her through it (more on that later). At some point her breathing became difficult so I turned her on her side and that helped. When her seizure just might not stop, two minutes is a long time.
1:06 am: The seizure had stopped but Lisa was unconscious. Time to keep talking her through it. Time to make sure she's keeps breathing. Time for intravenous Ativan. Time to get to the ER.
Time, of course, is the only valuable thing we have. Lisa and I both struggle with that - she reminded me on our way to the ER that driving slowly was much less taxing for her so twenty minutes turned into forty.
Lisa tries to do too much, a matter of her expectation still far exceeding her body's program; she is Girlbert! But those are the drugs talking. It gives her some time without debilitating headaches and time to follow her treatment plan. But while making her feel like Superwoman, it degrades bone density and makes her more prone to injury. Everything is time.
There's 911. Normally that buys you time but we live in the woods. Our neighbor who had a heart attack waited 45 minutes for them to even show up. So we weigh time against risk - of Lisa having a seizure in the car on the way to the ER.
And I think that's what everyone does - weighs time against something else. And usually, it's time that loses out. We put our careers ahead of time with our kids; we put our mortgage ahead of date night; we put the TV ahead of a sit down dinner.
The one thing Lisa and I will not compromise is putting right here and now above everything else.
1:12 am: Once she seemed stable (breathing and relaxed), it was on with the pants, move the car (we'd packed the emergency hospital bag earlier this week!), check on her, get her ER clothes, grab a few other essentials. The first signs of her coming to were barely perceptible, an easing of facial muscle tension, regularity of breathing, the slightest stirring. "Honey, you have to pull yourself back here. You can do it. Reach into your meditative state. Quiet your mind..."
At some point she began responding with fluttering eyes and slight movement. She reached a level of consciousness that was marginally aware of her surroundings. Then she could nod but her words were still completely incoherent.
1:20 am: "Honey, I want you to meditate. Calm your mind. Can you do that?"
Nod. Progress.
1:24 am: "Honey can you hear me?" "Uh huh." Progress.
Over the course of the next hour she came to. We talked about going to the ER. While that sounds like a no-brainer, well, all I can say is imagine coming to at a totally different time and place than you expect, having those around you not understand what you're saying, perhaps not understanding what they are saying, being told you need to leave a place of comfort to a place where you're sure to get no peace or rest... Belligerent is not quite the right word for it. So there was more weighing, this time the need to have her in the ER if she had another seizure against the risk that her distress would bring on the thing we were trying to prevent. Low stress won. No car, more talking.
Besides, she was already near the max dose for steroids. They could give her intravenous Ativan and get her back if they gave too much but then again, Ativan did nothing for her last major seizure. They could keep her breathing. But stop the seizures? No, at this point it's up to Lisa.
At some pint, our cat, Truly, made a B-line to come nuzzle Lisa and I. Purring and lightly head-butting as if to say, I'm so glad you're back. Leave this for the hospital, no matter how great the need, is the most stressful thing even when you've been through it all a few times already? Not a chance. "But Honey, you had a big seizure and if it comes to that, they can keep you breathing." I think the clincher was her dawning realize of the magnitude of something she had no idea even happened - so we were off to the ER.
She directed me and we packed a few more things that didn't really fit in the pre-packed emergency bag and we were off. Taking our time, of course, on the drive.
3:45 am: We were nearly to the hospital when she said quietly: "I need you to help me remember something."
"OK, what?"
"I need to write a thank you note to Santa Barbara."
More on this later: We're planning on moving to Marin county following her chemo and radiation treatment for the healing vibe, proximity to one of only a handful of neuro-oncologists in California, walking-distance autonomy for Lisa that nowhere in Santa Barbara can quite provide. While there are plenty of healers right here in Santa Barbara and while they have been wonderful, her shaman's teacher lives there. Not to mention the proximity to the neuro-acupuncturist in San Jose. Some of the most practiced monks / healers live and work there. It is truly a healing mecca, and she intends to write about just how profound a place she found Marin County during our recent visit to the area.
But first with this thank you to Santa Barbara. It's Lisa's realization that deep down Santa Barbara offers this amazing level of support - a level of support that leaves both of us just plain overwhelmed.
As we drove down the hill, Lisa commented on how pretty Santa Barbara's lights were, mostly twinkling in the very early morning mist. In most ways, Santa Barbara seems to live up to it's early roots of topicality, movie star mecca. As you roll along in your nice convertible, passing shiny cars, strikingly good looking people, the beach, tourists, college students, and hotel workers, it's difficult to see much more.
But beneath the pretty lights, cars, and people there's something to Santa Barbara that you likely won't see unless you have some really big problems. Beneath it all, there are people willing to do anything they can to help. And that means everything when you can barely (or can't) help yourself.
When we got home from the ER, a neighbor who knew our situation was backing his pickup-full of firewood (our sole source of heat) that he and his wife had split for us. Another has taken care of the cat for days at a moment's notice. When Lisa first thought she had hit her head, it was my boss who said "get her to the hospital and I'll cover it."
This comes from friends, yes. But it also comes from friends of friends, from acquaintances, and from strangers. It comes from doctors and nurses and hospital cleaning staff who want to see you up, and happy, and leaving their facility.
The most important part of it has nothing to do with what someone is giving or offering. It has everything to do with an attitude that leaves no doubt that everyone is in our corner.
It's been claimed that one sees several hundred people per day in the hospital and we can certainly vouch for that. What we can also vouch for is that out of hundreds of people who helped us at Cottage Hospital and the Cancer Center, only three did not share that positive attitude. And somehow, someone else stepped in to take their places so our entire experience was beyond outstanding.
The county clinic has a few more employees who seem to be burned out helping people at that level. At the same time, there's a nurse in Internal Medicine, Linda, who is ON it. And then when we had problems understanding how to navigate the health care side of the system, the clinic director brought us into her office, explained how she could help, and proceeded to hand us off to the right people. Then there's our Swami Social Worker - the first person to actually explain how to navigate Social Security and Medi-Cal. And the County Pharmacy staff amazingly knows just how to get us the paperwork we need if we can't afford something out of pocket.
Every one of these people make our problems their problems. And to us that's what has so defined Santa Barbara for us. Friends, friends of friends, acquaintances, and total strangers making our problems their problems. The bigger our problems have become, it seems the more friends we have here. That is truly a unique place.
Lisa's 7:30 CT scan showed no additional swelling.
Grandma
Today is my late Grandma Tomlin's 100th birthday. Even as a silly, eye-rolling (all grandchildren do that, right?) kid, I appreciated my Grandma's incredible strength, humor, and that she was a horse girl, like me. As I got older, I recognized and admired how she held her incredible strength and sense of humor through all things. Grandma "T" was a divorced, single mom in the fifties, LONG before it was the thing to do, and she raised my dad to amazingness in spite of how hard it must have been. She never stopped laughing, and making all of us laugh, even as her body and mind began to fail her before she passed away.
To celebrate this big day for Grandma and I, I'd like to share a funny story about my most recent stay in the hospital.
I had been meditating in my hospital bed, Boyfriend sound asleep to my left, when the nurse came in to take my vitals at 5:50am.
"Good morning, I'm Jenny. Sorry to wake you, but I need your vitals."
"It's okay - you already get brownie points because your name is Jenny - one of my closest friends is a Jenny."
"Well actually the latin version is Juanita, but I go by the American version because I like it better."
"Really? I didn't know the American version of Juanita was Jenny. Juanita was my grandma's name. I guess it's no coincidence I like Jennys, huh?"
Or that I had just been talking to Grandma T.
I have long sought out Grandma's strength and humor during my own hard times, knowing that I hold some piece of her within me. And it never fails - Grandma has always been there when I need her. So I'm celebrating her all the more today by taking her with me as I go for my first radiation treatment.
Happy birthday, Grandma. Thank you.
Amping Up
Team Tuber-Removal has been chosen and the Tuber-Removal Plan has been (mostly) established!
Have I mentioned that I'm the luckiest girl in the world? What a week - I have such immense, overwhelming gratitude for the team of incredible doctors I've surrounded myself with as I spent the week planning chemo-radiation therapy. I'm astounded by their willingness to bend over backwards by working late, calling on favors, and answering every question I can possibly fathom. It might need a new word - INCREDITUDE. ASTOUNDITUDE. OVERWHELMEDITUDE.
Meetings with my radiation oncologist, Dr. S., and uber-oncologist, Dr. G this week determined that the most effective tuber-removal plan for me is a combination of chemotherapy and targeted, conformal radiation. The radiation will obviously begin to kill the tumor, but as always, allowing the tumor more space could actually cause it to regrow or become more aggressive. So we'll be giving the little tuber a one-two punch with an oral drug I can take at home once a day called Temodar through the duration of the radiation treatment to keep it knocked back as the radiation eliminates it.
Tomorrow I go in for my final pretreatment scans, x-rays, and further consult with Team Tuber Removal.
I begin 33 days of radiation at the Cancer Center of Santa Barbara on Tuesday, with radiation days five times a week for seven weeks. I will be taking the Temodar every day for the entire seven weeks.
The complementary plan:
Recent travel, my stay in the hospital, and more travel have all gotten me quite steered off my intensive months of the highly raw, plant-based nutrition program I'd been following to keep my body maximally healthy for my healing journey. I resigned myself to the dietary changes, going with the flow, despite knowing that I'd have to do a bit of detoxing to get back to where I was prior to three weeks ago. Especially in the hospital - upon hearing of my vegetarian requests, I received primarily pasta, bread and pancakes. Yummy, but not much greenery!
So time to shift gears and get back to providing my body with all the raw, clean, whole foods I can provide her. Boyfriend and I stocked the refrigerator with produce and supplies from our fabulous Isla Vista Co-op the other day and have reinstated Operation: JUICE. Let the healing power of nourishment by whole, locally grown, organic foods begin!
To give my body a frest start, I'll be going in for a colonic this week with Alice's Natural Health Care in Santa Barbara. I've long believed in the healing effects of colon cleansing after many years of poor eating habits and digestive struggles, but only been introduced to colonics through Alice. The results of my first colonic a few months ago were incredible, and I'm looking getting my system back on track and prepared to take in all the nutrition I'll be providing, as effectively as possible, in the the next months. And Alice is one of the wonders of the world, a grandmotherly, healing type, who spends equal parts educating her patients on nutrition and holistic remedies as she does performing the actual colonic service.
As long as we're on this thread of WAY TOO MUCH INFORMATION, I'll just keep going. In the midst of my strongest juicing efforts this summer, I was juicing two to three times per day and often telling friends how incredible I felt, in spite of the fact it seemed I didn't have to eat much solid food. One of the common comments was, "Don't you have the runs or something?" But my answer was a big, fat NO. I'd explain that I regularly battle constipation (Anal? Who, me?) and that for the first time in my life, I was actually regular. So there you have it. I'm a thirty-two year-old expert on pooping and hemmoroids. Ask me anything. So colonics? Another key to ultimate health.
I will need to be cautious with my exposure to illness as chemotherapy is so detrimental to the immune system, and the immune-suppressing effects of the Decadron I'm taking to keep swelling in my brain to a minimum has already been evidenced by a case of steroid-induced acne. Vanity moment: First a brain tumor, now adolescent-style, bumpy, erupting acne? So I'll be keeping a bottle of Immune Boost on myself at all times. Cold and flu season is here, and this preventative remedy will assist me at keeping the threat of virus-borne illness at bay during my treatment.
My treatments at Dr. Zhu's Neuro-Accupuncture in San Jose went incredibly well, as my brain function, clarity, and energy steadily increased during my week of treatment there. I'd been complaining of the side effects of the seizure medication, but hadn't realized just how foggy, scattered, and unfocused I had really become, until I felt such incredible shifts following accupuncture. I can carry on a conversation without dropping words and losing track of what I'm talking about for the first time in months. My handwriting has improved, after becoming worse and worse all summer. Attempts to multi-task are no longer interuppted by confusion, frustration and overwhelm. Exhilarating. I will certainly be going back to San Jose as needed during or following radiation treatment here in Santa Barbara.
I'll affectionately refer to my complementary team of healers as Team Love The Tuber into Oblivion. My healer, shaman, and Reiki master friends are on call and ready to assist as I embark on my healing journey. I couldn't feel more supported and blessed to have them in my corner.
The single, most powerful tool I have in my healing toolbox is meditation. I have increased my practice to several hours a day, and the effects are far more powerful that I could have imagined! I can hold a groundedness and clarity throughout my day like I've never known, even before brain tumor. It's just as Boyfriend pointed out just over a month ago: All the nutrition and healthy raw food in the world aren't going to help me if I can't control my mind. And now that I've found the way to control my mind, without fail, I know that my spiritual practice is the KEY ingredient to healing myself from within.
Weekend Recap
Hours prior to my release from the hospital on Thursday, my shaman called. I hadn't spoken to him all week, but a mutual friend made him aware of my condition and subsequent hospital stay.
"Lisa, a great shaman and teacher with whom I trained with in Nepal, is in LA for the weekend, and I've arranged for you to meet with her on Saturday at 10am. Can you be there?"
He had no idea that barring any hang-ups with my discharge from the hospital, I was planning on being in LA for the weekend while Boyfriend did some sailing work. Crazy. Timing.
Everything slid into place, and the trip was underway. The numbness continued in my left side on Friday, with one instance of increase tingling and vibration in the car, but I shut it down quickly with meditation and breath.
Saturday I took a cab to and from the hotel to meet A. Gratitude and humility overwhelmed me upon introduction to the shaman. and her translator, I sensed that this tremendous opportunity was an indication that the universe was hard at work. For me. I told my story before she began her work. The translator interpreteted her words as she resonated with my situation and performed a healing ritual and blessing.
"The planets are very unhappy with you - they have been since you were 24 years old."
The year I moved to Colorado.
"The changes you have made recently are good - they are helping, and you must continue."
I clarified that my increased spiritual practice was a step in the right direction. I had actually began increasing my spiritual practice a couple of weeks back, and have been meditating for several hours a day now since. The shift has been quite profound.
"Yes, that has been very helpful - the gods see that you are helping yourself, and they want to help you. But the next 6-7 months will be very hard - you must continue your practice, continue with the work and the changes, it will help immensely. After those months, things will get much easier for you."
The translator relayed instructions from the spirits as to rituals and exercises I need to practice on my own as I move forward. Lots of homework. Homework is good.
"You need to pursue western medical treatment as necessary, but keep your body and spirit strong with these exercises. Practice them every week, and practice them every day you have your treatments, too. Pray to the spirits and planets to keep you strong and heal you as you move forward."
The energy and presence of spirit I felt in that room. was more tangible, more palpable than anything I can do justice with words. Gratitude overwhelmed me throughout my meeting and stayed as I departed with feeling of healing, peace, support and calm.
Back at the hotel, I peacefully reflected I had never felt so grounded and whole in my entire life. The tingling in my left side was GONE. I'm doing this! I'm going to heal myself, and I'm already on my way. Clarity overwhelms.
After racing on Saturday, Boyfriend picked me up and we attended dinner with the owners and crew of the red boat. A marvelous group, with a couple of breast cancer survivors among them, all shared their hugs, well wishes, stories and strength with me throughout dinner. Thank you. And despite the increased activity on my mind and body, even after a week of bedrest, not a sign of a tingle, much less a seizure, all night!
Sunday while Boyfriend raced, I split my time in the hotel between meditating and utilizing the high-speed wireless and down time to gather information on the chemo-radiation treatment options I'm facing. So I have lots of notes for my appointments this week, beginning this morning with my appointment at the Cancer Center of Santa Barbara with my radiation oncologist, Dr. S. Can't wait to learn more as I proceed with tuber-removal planning.
Still no sign of a tingle. It's go time, little tuber.
A Word From Boyfriend
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
