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...
Earlier this week we found out that Medi-Cal denied Girlbert's application on a technicality. Happy birthday. Yes, we can appeal. Yes, we can submit a new application so all is not lost. But the cost to her in time and effort was enormous so she was a bit devastated, had a seizure, meditated, and tried to grasp the technicalities of what to do now. And of course, her creditors phone calls just keep coming. So the situation is dire but not desperate.
Today Lisa woke me with painful cramps and joint pain in her knees and feet. Maybe it's the medications, maybe it's overuse, but whatever it is the pain brings the risk of seizure. But for Lisa, it was a wonderful morning, looking out our window seeing the trees just touched by the new day's light through the mist. It was wonderful because while we had another exausting day to look forward to, for a few moments we could just enjoy each other's company. It was wonderful because it was her Birthday.
The determination against any odds to be positive is what makes Lisa shine. While it might seem irrational and delusional, she knows only too well the situation, with daily seizures, now near constant pain, risk and reminders at ever turn. Yet looking around the waiting rooms we now frequent, the grocery store, or walking down State Street, Lisa leaves a wake of people whose days have been brightened by her Shiny, Sparkly Energy.
Today, there was another side to her. She wore her "What are you grateful for?" t-shirt from Cafe Gratitude. We bought cupcakes from the Crushcake Cupcakery and she went to every technician, nurse, and doctor she has and explained how she could not possibly express the extreme gratitude she has for everything they have done and continue to do. And she passed out cupcakes. And when I compare how she looked then to how she looked recieving this beautiful flower arrangement (and we haven't afforded ourselves flowers in a long time), I'd say she beamed with the flowers but she was simply overpowered with joy giving away cupcakes on her birthday. As she said this evening: "Are you happy? Because that's all I care about." That is Lisa.
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?"
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."
"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.
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.
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.
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.
I'd like to share a letter written by Boyfriend yesterday to friends and family, summing up his thoughts on our week.
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".
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.
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!
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.