So there's more to the title of that last post - much more - but I opted to quit with just the facts last time. Just get everybody up to speed with the story, while taking a little more time to process and plan Part Two.
As I wrote the previous post, something struck me as I typed the words, "Believe It." They appeared on the screen before me, and I realized I had much more to share than "Just the facts, m'am". One of my mantras over my years of exploration into my own spirituality, my mission in this lifetime, on this planet; has been "If I believe it, well then it must be true," or "If you believe that, that it will be true for you." I'm always telling people: "There is so much power in what you think!" Also, "Write down what you want, and you'll have it."
I was really lucky to have this really great riding instructor, professor, and mentor in college whose mantra was, "There's no sense in practicing at all, if you're going to practice the wrong things. Practice correctly, or don't practice at all." She was, of course, talking about riding horses, but I've carried that mantra with me through all aspects of life. She's also one of the happiest, cheeriest people I know, so I'm pretty sure she applies this statement to her whole life, too.
I didn't realize how to apply it to more than riding then, but I see it so clearly now. I've been working for a long time toward the goal of being happy, and more recently, toward health. Obviously the two go hand in hand! So I practice happiness, instead of sadness. I practice making healthy choices, instead of unhealthy choices. This isn't to say I'm always happy or healthy, or that it's easy. But I make a conscious effort to practice correctly. If I get off course, I make a correction. And I learn from my mistakes. And I believe that I will achieve my goals. I write down what I want. I imagine myself succeeding. And I know anything is possible, as long as I believe it.
I struggle with doubt, sure. I have to fend off plenty of sadness. There will always be obstacles, but the point is to not let my mind be one of them. But I've made a practice of believing everything will work out in a positive way, provided that I stay focused on the positive outcome. I've had plenty of help from healers, shamans, and energy workers to help drive that point home throughout the years, and it's finally starting to stick. I'm still a student and life is one lesson after another, but practice makes perfect.
Okay, I admit it. Yesterday, I was way depressed. The calendar had turned over into October, and I realized: 2010 is three-quarters over. I must write something - I only have three months to catch up on most of a year of not writing as much as I'd wanted all year! How's that for a glass-half-empty kinda 'tude?
Panicked over the thought of providing my readers with another month of not much, I'd cleared my schedule with the intention to write. And not just anything, but something INSPIRED. Something GREAT. SOMETHING TO WRITE HOME ABOUT! I'd finally made the time, and... nothing. At. All. Just staring at a blank, white text box on my super-deluxe-widescreen. Blink, blink. Struggling to flow was having exactly the opposite effect. As it always does. I was left with no choice, but to abandon the effort. Start fresh tomorrow, Girlbert.
This morning I was determined not to let it happen again. No expectations, combined with some good music, and a couple of cups of COFFEE, have my fingers dancing around the keyboard like a gay chorus line! Yay for COFFEE! And TALKING HEADS! HAPPY OCTOBER, EVERYBODY!
Sorry - I'll reel it in a notch...
So, October really is my favorite month of the year, and I want to sincerely welcome everyone to the month in which Girlbert was put onto this earth, 34 years ago. And I want to make sure that those who are interested realize how grateful I am to have enjoyed another year on this planet, even while feeling as though the battle was uphill some most of the way. I guess if the earth were flat, my calves wouldn't be nearly as defined, would they?
But back to my point - freaking out about not being inspired to write whilst feeling obligated to provide content is really not the point of this website, now is it? I was reminded of this earlier this week, when a friend emailed me to tell me how inspiring I am. I wrote back to tell her thank you, but I certainly wasn't feeling very inspired at the moment. She replied: "I know, I get the same way, too - but we shouldn't write unless we're feeling it." Ding ding! This website won't inspire anyone, unless the writer is inspired.
Which reminds me of something I read earlier this year: "Are you a human being, or a human doing?" Most people DO spend their time DOING things: rushing from place to place, checking things off their all-important "To-DO" List. When the point of life is to BE. Be in the moment. Be present. Just BE.
Ah, so, do I practice what I preach? Nearly never. Especially now that I have the ability, finally, to DO. With the reinstatement of my driver's license, in particular, I can actually get myself places and DO things.
So this week of frustration and self-imposed anxiety brought with it the realization that I really need to get back to BEING. Straight away! Chop-chop! I mean, Om...
I'd like to promise that I'll be posting more often, now that I've been reminded the importance of doing what I love, which is writing, creating, and being. But I can't, because despite the fact that I know how important it is to BE, I still have much to DO. As the work week begins, I'll be hitting the ground running with many items on the Girlbert Schedule: blood tests, an MRI (Tuesday, positive vibes are being accepted now!), an appointment with my oncologist to discuss aforementioned MRI, prescriptions to be called in, prescriptions to be picked up, and bills to pay (with what, I don't know).
But I'm going to make a greater effort to BE present, as I fit in some fun stuff, too: free painting and yoga classes at the Cancer Center, breakfast with my cancer girlfriends, biking with Boyfriend, and some hang-time with my horse.
It's still Sunday - plenty of time left to BE today. I think I'll brush up on the Art of Doing Nothing.
READERS: Please share your struggles with, or tips for, BE-ing in the comments. Any stories about being present or advice you have for those who can't stop 'doing', would be so greatly appreciated. I could use all the help I can get, and couldn't we all! Thank you in advance.
Last week was rough. Beside it being a chemo week, I had the added bonus of an extra empty bank account, extra horse expenses, all of our computers being down for maintenance, a Boyfriend meltdown, more calls from creditors, and now a sick Boyfriend. Boo hoo, right?
So what to do when I felt well enough, but futz in my garden and yard? Good news is, I still know my way around a pitchfork and a wheelbarrow! I raked and moved leaves, turned compost and tended to my fledgling garden.
So Girlbert, how does your garden grow? Funny you should ask! I've harvested two, count 'em, two, tomatoes, but the little tomato plants hold the promise of more, with several green fruits to ripen, and more forthcoming, as evidenced by the many yellow flowers opening on the stems. Some of the lemon cucumbers are nearly ready to harvest, too. There's a baby bell pepper, and the very tiniest acorn squash trying to find a spot to settle down and grow. And my herbs seem to be flourishing in our recent heat wave - basil goes with everything!
But I have no idea what I'm doing, despite all the advice I've received (thank you, gardening friends!), books I've collected, and information I've gathered online. There are lots of spiderwebs, one split tomato and one with a wormhole, lots of dead leaves, and something ate my first (and highly anticipated!) cucumber already. Sometimes I think, "Will I ever enjoy the fruits of my labor? Will anything come of all of this hard work?"
Not that it's all bad. Those two tomatoes? Really. Yummy. And I love hanging outside, with the plants. And the trees. And the nature.
So I water my little plants when they seem thirsty. I carefully remove the spiderwebs, any wilted or half-eaten fruit, and brown leaves. And I admire them for their perserverance. I encourage them to do more.
This week I caught myself telling them, "Grow, little ones, grow! Bloom, little flowers, bloom! Grow tall and strong, reach for the sky! You have great things to do!"
The plan was to: A#1)Take driver's test. B#2)Pass with flying colors. C#3)Get driver's license back. D#4)Drive myself to my doctor appointments, pick up groceries, or, omigosh, go see my horse! The possibilities were endless!
Ambitious, yes, but I'm nothing if not a little determined to make up for lost time these days. More often than not, my haste to check things off my list comes at my own detriment when those plans mysteriously fall apart...
Me, through frustrated tears: "I like having a plan. Plans make me comfortable. But I'm going on two years of nothing going according to plan." Boyfriend: "I know..." he chuckled and gave me a squeeze, "but let's learn from it, okay?"
So, I laughed too. I know that once I can laugh about it, I can learn from it, and this lesson was begging for my acknowledgement.
Sometimes, it feels like the same lesson, on repeat. I miss something, make a mistake, and the Universe just hits the Play button again. A lighted placard, patiently illuminating the words "Try Again". My own little Groundhog Day...
Sometimes I see it right away and laugh with Her. Sometimes the irony of a lesson slaps you in the face so hard, you can't even see straight right away. The lesson becomes so profoundly clear, you have to admire the creator of the lesson. And then you realize it's you. YOU put yourself in that place to learn THAT. All the while, She's begging you: Are you getting it yet?
Like when you go to take your driver's test, after over a year of not being able to go anywhere by yourself. You're on time, you have all of your paperwork. And you're at the wrong DMV. That's right - I drove to the wrong place to regain the ability to drive by myself. Hmmm...
Today I lost my patience with Her and yelled, "What the F#%*k do you want from me?"
And She shot right back, "For you to do better."
Right. I can, and I will. Three more weeks, but next time, I'll be at the right DMV.
"Watch a plant for 5 minutes, 15 minutes, half an hour, and you won't see any change. But come back the next day, and there's new growth. There's always something happening, even when you can't see it."
"Focus on the good, focus on the positive changes, not the setbacks."
"Remember how long you have been training yourself to do things the way you currently do them. It may take at least as long to untrain yourself; to train yourself to do it a different way. Change will take time. Be patient with yourself."
It's been almost a year since my shaman said those words to me. I repeat them to myself often. I write them down over and over in my journal. And I still struggle to remember...
I just recently lamented, "It's been a year, and nothing's changed!" Staring setbacks in the face seems to be my specialty these days.
But I bring this up now, because Spring has settled in and set up camp here in the mountains of Santa Barbara. All she has left to do is wait for Summer to arrive.
And so the next season of my journey has begun. I'm planting a garden: sowing seeds, digging in the earth, feelings running through me, just as dirt runs through my fingers.
Gardening has always been a grounding experience (I guess the metaphor's pretty obvious!) for me. But it's always been my own thing. I drive myself to the nursery, pick out the plants, seeds, soil. Bring them home in the back of my Explorer. Set everything up, dig up the soil, set the plants into their new homes, and care for them all summer.
But this year is different. This is the first vegetable garden for both of us, in the past I've always stuck to a flower and herb garden. Just something to do in my free time, and I've mentioned my ongoing interest in making things look pretty, right?
This is the first time I've ever tried to make a garden make sense financially. We're trying to actually save money constantly spent on fresh, organic vegetables, and I've never been very interested in crunching numbers. Leave it to the promise of a garden full of nature's bounty to bring out the "Mathlete" in me!
This is the first time I've ever had to plan a garden with someone else. Every decision must be mutual, because it's our time, our money, our effort. It's a big lesson in working together, which is hard work for both of us. And all of my patience seems lacking as eagerly await to get my hands dirty with a project, happy to put off the hard stuff for another day. Let's buy the vegetables and plant them! We'll figure it out as we go, right?
So it seems I have much to learn from the vegetable garden this year. I will continue my lessons in Letting Go and Accepting Help from Others, all while taking an advanced course in Compromise and the Science of Mutual Decision-Making. And I'm really digging into it. Sinking my fingers in, sifting through the lessons, sowing the seeds, anxious (but willing to be patient) to unearth the gifts that are sure to emerge from the combined efforts of myself and the universe.
It's Valentine's Day, so I'm going to write a little something about love. Before you start rolling your eyes in expectation of something goopy about my (fabulous) boyfriend, I want you to know that I'm not talking about romance. I'm talking about love - the unconditional love that exists between us all. The love we extend to a friend, or even a stranger, when she needs it the most.
Since April, I have learned, in a most profound way, to be on the receiving end of more love, kindness, selflessness, and generosity than I thought existed in the Universe.
Thank you, all of you. I'm sending a whole Universe-full of warm, sparkly love back to you.
Stop listening to the naysayers, the doomsdayers, and the Negative Nellies. Because the only thing that matters in this world is LOVE. And you'd better believe that the more you give, the more you receive. So put it out there. There's more than enough for everyone. You do have time for love. We all do.
I received this fantastic email from a friend, then passed it on to a handful of friends, one of whom posted it on her blog. Huh. There's a novel idea. Well, YAHOOIE for that, because I get to put some new content on my site without having to write much. Which is good because I'm on my monthly dose of chemo this week, and the writing's just not flowing...
They call this chemo-brain. It's like the process I have to go through to convice myself that taking a nap is better that just being a grouchy blob on the couch just to be upright for a few hours a day.
Anyway, this is a great story. Enjoy!
One evening an old Cherokee told his grandson about a battle that goes on inside people. He said, "My son, the battle is between two "wolves" inside us all..
One is Evil. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.
The other is Good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith."
The grandson thought about it for a minute and then asked his grandfather: "Which wolf wins?"
The old Cherokee simply replied, "The one you feed."
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 (steroids make me feel like Superwoman!) after Friday, and my Ninja Neurologist 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 treatment 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 check 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 channelling 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, your 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...
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.
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.