It's been over a year since the event that led to my diagnosis. Apparently this blogging thing is hard to keep up with when you're not all hopped up on steroids, so I haven't been keeping you all as up-to-date as well as I would like. Not to mention the fact that all of my excess energy has been channeled toward growing a brand-new head of hair! (Evidence in the picture!)
So - I've compiled a list of questions that I find myself answering. Frequently. I've added a NEW PAGE (a link in the menu above, as well) to this site for those questions, but here's a little teaser: What and when was your diagnosis? I was diagnosed with a type 2 astrocytoma in my right temporal lobe - brain cancer - April 27th, 2009. I'll never forget the date, because I had to make sure and write a blog post honoring my little brother on his 30th birthday (April 26th) before I went to the hospital for what seemed like a possible concussion. It's important to have priorities. How did you discover your brain tumor? I had a seizure while home alone April 24, 2009. I had been getting ready for bed, it was late, and I brushed my teeth and washed my face. Then suddenly, I found myself, 'coming to' at my desk, in front of my computer, which had been shut down already. "Huh - I thought I already went to bed," I thought, and went to bed. I had no history of fainting or seizures.
The next morning I had a headache. And a fat lip. And when I got up to pee, I noticed the bathroom rug was all wadded up in the middle of the bathroom floor. Something wasn't normal, but maybe I just tripped and fell in the night and hit my head and didn't remember. When Boyfriend returned home later that night, and I told him what happened. The headache persisted.
The following morning the headache was worse. We talked about going to the ER to see if I had a concussion, but I didn't have insurance and we were broke. I'd had a head injury before - I knew they'd want to do a scan - cha-ching! So I decided to take a nap. After I laid down, the left side of my body began to tingle, my ears began to ring and I detected a horrible taste in my mouth. (I now refer to these feelings as my 'conscious seizures'.) I was scared, so I called for Boyfriend, and described what was happening. It was very uncomfortable, something was definitely wrong with me. It was time to go.
Boyfriend called his boss about getting his payment for work early so that we could go to the ER. His boss said, "You just take her, and I'll take care of it."
So we went. As soon as we got to the ER, and the words "hit my head" escaped my mouth, I was put in a neck brace and strapped to a gurney. Here we go, I thought. I had a CT scan and was brought back to a waiting room with Boyfriend. I had another 'pins and needles' episode, telling Boyfriend, "It's happening again, I'm having that feeling again!" He called the nurse and she gave me an anti-seizure drug. She explained to me that what I was feeling was a mini-seizure, that I'd probably had a grand mal seizure at home two days ago and hit my head.
Then the doctor came in. "We looked at your scan. I'm so sorry, but you have a very large tumor in the right side of your brain. That is probably what is causing the seizures. But you need to go to the other hospital for observation and to have an MRI."
Boyfriend was holding my hand, so I squeezed it, looked at him and the tears started. "I'm so sorry," was all I could think to say.
His face was already even with mine, his eyes locked on my teary ones, "We'll get through this, don't worry."
One wipe with the back of my hand, and the tears were gone. Of course we will.
Cross your fingers that my Medi-Cal card comes by the time I get back to California next week, so I can pick up my next round of chemo on as soon as I get home. Everybody is getting really tired of hearing, "I'm still pending for Medi-Cal." Myself included.
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...
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.
Try as I might, it's impossible to stay calm and relaxed if my partner is anything but.
Boyfriend is struggling to keep his head above water as I've cut back on my work-load (read: he's doing it ALL - did I mention he's a superhero?) He's been working increasingly long hours, juggling our little shoestring-operation by himself as we take on our very first paying web clients. Yesterday, in the heat of some kind of anxiety-fueled frustration, he looked at me and said, "You're just going to have to get it together, because we have to pay our bills."
Note to anyone who ever has to live with someone who has a large tumor in the emotional center of her brain, is on anti-seizure medication that sometimes heightens, or then again sometimes dulls, her senses, and never has never been good with stress, anyway: NEVER tell her that she's "just going to have to get it together." Those words actually cause her brain to go numb, if not melt into a puddle, and greatly increase her risk of seizure.
And it was a doozy. As I was lying in bed, going over the day's many low points, internally wording comebacks at everyone with whom I've ever been pissed, wishing Boyfriend would just LAY off, but feeling terribly GUILTY that I'm no help on our quest for financial stability WHATSOEVER...
Shit. I'm having a seizure. I've given myself a fucking seizure. "Honey, wake up - I'm having a seizure."
Later, I asked him how long it lasted. He thought one to two minutes, but it felt like twenty. Stronger than the last one, and I hadn't even missed any medication. Double shit.
It just so happened that I had an appointment with my neurologist today. I was unreasonably nervous - I hadn't done any of the "homework" he'd given me since my last appointment, six weeks ago: check out treatment options and alternative therapies, get an appointment with a neuro-oncologist for a second opinion. And now I was going to have to tell him that I'd had not one, but two seizures since I saw him last. I felt like the bad kid, having to tell my teacher "the dog ate my homework". Just lame. I pictured my Ninja Neurologist, all disappointed, writing me off, for not doing my part in my own treatment. I pictured myself, begging him not to give up on me. Making 'excuses' for myself, like, "I had so much paperwork to fill out, we have rent and bills to pay, I did a lot of research on raw foods, completely changed my diet, and am working on a divorce-related, patient-financial-assistance stumbling block! Did I mention all the county and state patient assistance paperwork? Wait! Come back!"
Was he disappointed? Maybe a little. Did he threaten to write me off? Nope. Just offered ideas, and words of encouragement, and emphasized the importance of pursuing treatment options. He recognized the validity of my brain-cancer-damsel-in-distress, and swooped to the rescue with rapid-fire solutions:
"The patient assistance programs are so frustrating and slow. I'm going to have you to talk to Swami, one of the social workers here - he's really good - because this needs to change. I can see that you've done all you can and you're not getting anywhere. We need to get you scanned again, but I don't want to order an MRI until you have some financial aid lined up, because I don't want to keep racking up bills for you to worry about. If you're having seizures, that's not good. I'd like to up your dosage a bit - from two pills a day to three." By the time we got to the meds, I was relieved - man, do I hate those damn seizures!
Once I figured out he really was in my corner (AGAIN! Why don't I get that?), kicking some brain tumor and state-funding ass on my behalf, relief washed over me like a delicious shower in a world with an endless supply of water.
So my Ninja Neurologist got me all lined up to talk to my new Swami Social Worker, who was nothing short of amazing. He's the first social worker (in a long list) I've met with who's been empathetic, but savvy and insightful. I'm smiling right now as I think about his encouraging, knowing grin. He actually told me, "You've done everything you can do and should do. You're way ahead of the game - but it's an undignified process. In fact you're standing at the crux of what's happening politically and socially in this country right now. It's ridiculous. It's disgraceful. And you're a living, breathing example of why it needs to change."
My oncologist, Dr. G, declared that there has been absolutely no difference in my little tuber between my MRI taken April 29th and the one taken July 1st. My neurologist, Dr. D, agreed that it looked good, even pausing to comment, "You look good - you look much better than I thought you would, actually." Uh, thanks? More progress toward my goal to become a medical wonder!
So while we're all breathing a collective sigh of relief, my neurologist warned me not to be fooled, it's only two months worth of data. "Keep in mind you did have a seizure...you need treatment - NOW." Here we go, I thought. A western doctor pushing me toward drug or radiation therapy.
Boyfriend and I had discussed how to approach the subject of alternative treatment with Dr. D, but I was hesitant to even bring it up, assuming I would have to filter heavy sighs and rolling eyes. But the very next thing he said was, "Are you still looking into alternative therapies?"
And this launched a conversation wherein he explained that he would be willing to help as far as the limitations of his knowledge and western medicine would allow. He pointed out that he might not have peer review research data and FDA approval to advise me on alternative treatments, but was quick to add that "3000 years of Chinese medicine can't be all wrong." Whew.
He finished with, "Well, if you're going to look into those things, I'd do it now. Don't wait." He said to feel free to call if I had questions. He's opened the door to an integrated approach, whatever the right one for me becomes. Double whew.
I guess I'm not in Kansas anymore, Toto. I'm in Santa Barbara, CA, baby!
Additionally, I also talked to both doctors regarding another stumbling block - the medical financial aid application, denial, and appeal process (one more round!) that have consumed me since my diagnosis. It has been a horrendous, ongoing process (and a full-time job, really!), considering the mind-numbing effects of my meds and the tangled web of my divorce still very much a factor on my apparent assets and income (or rather, proving a lack thereof!).
Their collective advice - the squeaky wheel gets the grease.
Right. So I'm on the right track. Because I can be a very squeaky wheel.