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.
I am officially one of those crazy raw-food people. I've had the juicer a week, and the million-dollar question in our house has become: "What do we juice next?"
"Should we try carrots and oranges together?"
"What about apples and broccoli and carrots?"
I've been eating about 80% fresh, raw foods for almost a week now, and I don't know that I've ever felt this good my entire life. Energy and positivity abounds!
It's been a LONG time since the thought of adding anything to my to-do list each day, particularly something athletic, didn't make me want to throw myself off a cliff. But my energy level has hit the roof and BEYOND. I feel like my old self again, only better. I feel like I can do ANYTHING, maybe even multi-task! And I WANT to do things! Like yoga! And clean my house! And MAKE MORE JUICE!
Despite the fact that I did get to ride a horse (for the first time since February - yahooie!) and give a young friend of mine a riding lesson last week, I'm referring to getting back on my mountain bike. I haven't ridden since brain tumor (SBT) and Keppra.
Exercise has been LOW on the priority list for a multitude of reasons. First, taking the time has been difficult, with brain cancer being a full-time job and all. And I'm overwhelmed when Boyfriend asks me what he can make me for dinner, never mind what happens when the credit card companies start calling at 7am. Then there's the fact that even going for a hike would leave me a bit shaky, combining my medication's side effects with physical exertion. So getting on something with wheels, even with a helmet, hasn't seemed like the prudent thing to do.
But Friday I was feeling restless, not to mention brave, so Boyfriend and I went on an 8-mile ride. AND IT FELT GREAT.
Hopping on that kid's horse for five minutes last week actually did more lasting damage than the hour-long bike ride. My inner thighs have been punishing me, complete with maniacal laughter, ever since. (Is is lame to point out that I didn't bother adjusting the stirrups, and so I went without? For the whole five minutes?)
We just got back from our second bike ride. STILL GREAT.
Much of what I've read or seen with regards to fighting cancer on your own revolves around taking care of your body. Nutritionally, spiritually, mentally. We all know this, but it takes effort. I'm finally ready. No more excuses. I'm home, my guests have departed, my financial aid forms have been submitted, and the brain fog has lifted somewhat. Let's get this party started...
So begins a new chapter since my diagnosis. The quest to gather the information that speaks to me. To uncover treatments that resonate with me. To unravel the mystery that lies within me. To knock this tumor right out of me! Just this last week has brought much inspiration:
First I stumbled upon Outsmart Your Cancer, by Tanya Harter Pierce, in a thrift store. It has already proven to be a comprehensive resource for alternative and non-toxic cancer cures, as much of what I've found via Google ends up being covered in this book.
I finally got around to watching The Beautiful Truth, a documentary following the story of a 15 year-old boy, Garrett, who did a school project on nutrition as a major factor in preventing and curing disease, even cancer. His parents own a farm that rehabs orphaned or injured wildlife and he always researched proper diets for the animals they were taking care of. All of his research stressed the importance of a proper, natural diets for the animals. So he began to wonder why you never heard any such thing with regards to humans. So he began digging, and oh, what a tangled web he uncovered! The movie provided much food for thought, even if it did sensationalize much of the information. Discussion of that very flaw with Boyfriend did allow me to declare, "Isn't the benefit of being inspired to learn more worth getting past the presentation?" He agreed.
Then came Crazy Sexy Cancer, part two in my "Cancer-Movie-Night" series. A documentary by actress Kris Carr, who turned the camera on herself when she was diagnosed with a rare, terminal form of cancer, was a DELIGHT, if a movie about cancer could ever be such a thing. Her positive attitude, often turning to raw sadness, grief, overwhelm, and more, really hit the nail with what I feel on a regular basis. But I've been at this for TWO MONTHS. The movie chronicled four years of highs and lows during her journey with cancer. She met other cancer patients going through their chosen treatment paths, all with varied backgrounds, family lives and outcomes. She spent the four years exploring every option, from diet to acupuncture to yoga to laugh therapy to reiki to spiritual practice. The movie ended positively, with her cancer not giving her any outward symptoms and her doctor declaring the cancer stable enough that she need not see him or get another MRI scan for a full 12 months. It was a powerful message for me - never give up, never stop exploring all your options. Some of my favorite lines (paraphrased):
"It's all in our heads, we all have cancer of the mind." "I feel like Alice in Cancerland." "Fuck cancer." (I want one of the hats from the movie!) "What are you, one of those guys who likes cancer chicks?"
I'm definitely ordering Kris Carr's book (along with a slew of others) tomorrow. Can't wait!
I was also inspired enough to purchase Jack LaLanne's Power Juicer today, along with about 53 pounds of organic fruits and veggies. That's right, I'll be kicking my tumor's ass with knowledge and juice. Let the juicing begin!
I would never have imagined that I would need to come back to Colorado to regroup. Despite the fact that I have some very dear friends in Colorado, I haven't missed being here. A smattering of dread, barely recognizable, even began to seep to the surface as I prepared for my trip. I wondered if my trip might stir up some memories I wasn't anxious to revisit.
But as soon as the plane touched down in Denver, I knew I was to receive a very powerful message during my stay, because it was raining and the skies had become increasingly ominous throughout our descent. I called Jenny, my friend, driver, and hostess, as soon as I landed and she said, "Thank goodness your flight was on schedule - it's raining and hailing buckets in Franktown." For those of you who aren't familiar, the weather in Colorado is unpredictable, but usually the Denver suburbs are dried to a crisp by June - I was expecting similiar fire conditions that I left in California!
We drove straight to Dark Star Farm, owned by my dear friend Deb, where I trained horses, gave riding lessons and developed some lifelong friendships for 6 years. I needed a quick hello with my 29-year-old lesson horse, Reggie. He was the anchor of my riding school for over 8 years, and while I miss him terribly, it would have been selfish to move him 1200 miles to California, taking him from the farm at which he's comfortable and has received specialized "senior" care for so many years. Deb and Jenny agreed to look after him after I left Colorado. Jenny also runs Acadia Equine Rehab out of Dark Star and she and Deb have determined that Reggie is one of the farm's anchor horses, too. My eyes are watering and my heart is about to burst as I type, just thinking about how lucky I am to have been blessed with a horse who has touched so many people. Reggie and I had a good snuggle in the rain for a few minutes, and we told him we'd be back the next day.
My first three days here really drove home the "flow like water" theme - it rained buckets. I met Jenny's cat, suitably named Rayne, for the first time since she got him, and he's made himself my fill-in boyfriend while I'm here. I listened to Lauryn Hill's "Water" over and over. I was saturated to the core. The scenery is surprisingly green and blue - much different than the brown grass and foggy skies typical of Santa Barbara's "June Gloom" I left nearly a week ago.
Jenny has been amazing - driving me all over, allowing me to see many old friends and introducing me to some remarkable new contacts. In fact it was Jenny who put me in touch with the shaman I've been working with on my flow like water lesson. I spoke with him again last week, and his new advice was geared toward the study of plants: "You can watch plants for hours and not see anything happening, but you come back the next day, and there's new growth. It's proof that there's always something happening, even when you can't see it. So remember that, and don't be discouraged when you have a bad day."
The very next day, I finally got to meet a good friend of Jenny's, Frances Fitzgerald Cleveland, an herbalist, aromatherapist, healer and the owner of Frogworks/Kaeru Studio in Littleton, Colorado. After hearing so much about her healing abilities, I was anxious to pick her brain for some herbs and oils that might help me with my current physical and mental health. I was not disappointed. Frances is one of those people that just knocks you over with her aura the moment you meet her. And she was so willing to help, she offered to do some research for me, just as long as I would help her plant flowers and get some yardwork finished while we talked. Wait, did she just say plant flowers? Working with plants? Huh.
The energy of Frogworks and Kaeru Studio is tremendous - my visit was soothing and uplifting at the same time. I'm going to go back tomorrow for some more herb and oil therapy, and I'm sure my body will welcome another dose of healing energy after resting today.
Plans have been made to spend more time at Dark Star, meet another shaman, and allow my body to rest. I'll keep you posted as I continue my adventures, just where I need to be.
A friend recently referred me to this broadcast about spirituality and healing on NPR. The discussion involves whether spirituality is a valid method of healing and whether it can be proven. Several case studies are presented, the most profound being a woman, despite being diagnosed with the HIV virus over 15 years ago, remains healthy and clear of AIDS. She has never pursued conventional medication, relying only on prayer and meditation to keep herself healthy. Confounding? Not really.
While I'm always pleased to see this topic up for discussion in mainstream media, I've always found it intriguing that there is so much research done to prove the validity of spirituality. Because if it resonates with you, it works for you, and you don't need any proof. I KNOW what works for and makes sense to me, because the "proof is in the pudding," as they say. And the people who need scientific evidence will remain skeptical, possibly at the risk of losing sight of what makes sense to them anyway.
This quote from the article sums it up nicely, "It's good to be open-minded, but not so open-minded that your brains fall out." Really? Could there be any such thing? Putting a limit on open-mindedness doesn't sound open-minded at all.
I'm wide open to all of it. Maybe my tumor will fall out with my brains.
I went to bed last night in a funk. I woke up in a funk. Despite my efforts at "taking it easy", the requirements for application to county and state medical financial aid are stressing me out. Multiple appointments at various offices around the city and via telephone, each requiring me to detail reasons for and proof of my absence of income, rehash my broken marriage and subsequent divorce, chronicle just how somebody has this much debt...
It's making me TIRED.
Boyfriend just drove down the lane, off to an evening of Wednesday night sailing. As soon as the Land Cruiser disappeared from view, the project I was working on imploded, leaving a lengthy, indecipherable error message in it's wake.
Now what am I supposed to do?
The dishes are clean. The laundry is done. And Boyfriend even vaccumed this morning, after he scooped the litterbox.
Can't drive anywhere. Shouldn't hike around in the wilderness by myself. Time alone? With nothing to do?
Huh. I guess I'll take some books, magazines, my iPod, and the cat to the front porch.
I'll even take it with a full glass of water. Now how do I get a refill?
People have been asking me for a health update. I've been meaning to write it but so much has been happening creatively and energetically, I've been procrastinating. I mean, who wants to talk about her brain tumor when there are so many other exciting things to do? Seriously.
But it's time. Mostly because I think I've spoken to enough doctors and reiterated the information to enough family members and close friends that I'm actually capable of writing an intelligent update at this point. A week ago, not so much. Who knew that I would someday speak fluent medical-ese?
To get you caught up.
I suffered a seizure almost a month ago when I was home alone. I had stayed up way too late, been working way too hard, and I've been really stressed for over six months now. The seizure, head trauma and resulting swelling caused two mild seizures (for which I was concious) a few days later, the day Boyfriend took me to the ER. A CT scan in the ER revealed that I have a fairly good-sized brain tumor in the right temporal lobe of my brain. I was informed by the ER doc that what I had experienced, both unconsiously and consciously were in fact seizures. I was immediately admitted to the hospital for a week of tests and observation.
What the doctors are saying.
7 out of 8 of my western doctors* agree on the the basics of my situation: The combination of the tumor's presence and my stress level caused the first seizure. The sample taken from my biopsy, the size of the tumor, and my PET scan all indicate the tumor is slow-growing, low-grade, not aggressive, not metabolizing sugar, and only 10% of the cells are reproducing. Surgery and radiation aren't worth the risk at this time. Unless the tumor appears to grow or become more aggressive, it can be monitored very well with MRIs every two months. Oral chemo may shrink the tumor, but there's certainly enough time to feel out more options; there's no rush. All eight doctors do agree that I need to talk to specialists for more information and continue taking Keppra to prevent another seizure. I'm an otherwise healthy 32-year-old woman with a brain tumor.
*The eighth doctor believes that it was solely the brain tumor's presence that caused my seizure. But I KNOW how over-tired and stressed out I've been, so if I get a vote, I'm with the other seven.
What I'm doing for now.
I intend to follow up with the referrals to specialists by my doctors, and whatever tests and MRIs would allow me and my doctors to monitor the tumor. I am staying on the anti-seizure meds for now - my mind has become much clearer over the last week, although I still have to be careful not to try to do too much in any given day.
I have heard many good things about the oral chemo regimen, but will need to do my own research prior to signing on for the ingestion of 2 years worth of chemicals. I've been told that some people have all of the adverse reactions and none of the benefits; some are helped remarkably and have no nausea or side effects.
I've long been a student of metaphysics and alternative therapies, so pursuing alternative and mind-body medicine to treat my condition is an obvious route. I've spoken with many of my metaphysical friends and holistic health care providers for their ideas, support, and energy work. I've been doing some energy work with a magnificent shaman to whom I've just been introduced but have heard about for many months. He has given me homework to do - homework that I've intended to do for a long time anyway, but am now hyper-compelled to do, since being notified that I have a brain tumor. There are no accidents.
I will also be managing my health nutritionally, taking supplements and eating food with anti-cancer and tumor-fighting properties. Most of you know that I lead a fairly healthy lifestyle and eat really healthy anyway. I'll be consulting a nutritionist friend and this book to amp up my nutrition even further. Since my diagnosis I've been craving even more raw, fresh fruits and veggies than normal, so I'm thinking my body already has a good sense of what to do.
I've been doing my energy work, meditation and yoga practice daily. Sometimes I'm joined by Kitty and Boyfriend and it's good to have (even more) support! I've been working less, relaxing more, and writing, writing, writing. I've been allowing myself to breathe and do what I love, and it's resulting in an increased level of synchronicity in my life! Amazing new contacts, dear old friends and fabulous opportunities abound!
Next week I'm headed to Denver to stay with friends for the 2+ weeks Boyfriend will be sailing in New Zealand. I'll be relaxing with friends, both human and equine, and meeting with some healers there.
The picture at right shows the tuber's progression over the last 20 days. My hard work is paying off - you can see that that it's shriveled to a mere raisin of its former, tubular self.
I'd been lying awake for hours, head pounding, mind spinning, neck screaming, when I decided I should just get up and start writing.
Positivity is eluding me right now. To say that I'm terrified would be a severe understatement. While I know I'm supposed to be kicking ass on this tumor, I'm allowing it to consume me while I bury my head in a giant pile of debt.
I need a sign that everything is going to be okay. I need the universe to show me, unquestionably, that it's going to be okay. NOW.
Yesterday morning, I had no intention of posting this. I was in a dark place, unsure of myself and my abilities. I only wrote this down because I needed to get these thoughts out of my head and put my needs out to the universe. I often advise my brother to do the same, to write down his thoughts, his needs whenever he struggles with something. So as lay awake staring at the ceiling this morning, I could hear his voice, saying, "Write it down! Mock it up!"
[Thanks, Little Brother.]
I most definitely received my UNQUESTIONABLE sign in my email inbox last evening:
Hi Lisa, I was referred to your site by a friend of a friend of yours, and am in awe of the beauty of your writing, especially with what is going on with you right now. I was wondering if you would be interested in being interviewed for a documentary film project I am working on, you can check it out at www.thelivedexperience.com. Your story (actually more so the way you choose to live your life) touched me very deeply, sending you much love! Kate
Meeting Kate like this, reading her encouraging words, and discovering her fascinating project renewed me with certainty.
Everything's going to be okay.
You deserved to know. Because you deserve to try it, and reap the benefits. What does the universe need to know right now? Write it down. Mock it up! (In the comments, please!)
It's true what they say. That what you put out into the universe, you will get back. I know this, but had never had it confirmed so profoundly as when I was in the hospital a couple of weeks ago. The nurses and doctors at Goleta's and Santa Barbara's Cottage Hospital overwhelmed me with kindness - the kindness of strangers. But after four days of observation, I noticed it wasn't like that with everyone. Despite my pretty scary news, I was doing my best to take everything in stride, treating everyone with kindness and a smile. And getting it absolutely reflected back at me.
But some of the patients I came across in the hospital weren't in the same place. They were grumpy and sour with the nurses, doctors, even their loved ones. And unfortunately, it stifled everyone's attitude, which I have to imagine was a detriment to their own health.
So even now, while I struggle with what to do about my finances, I realize that there is nothing more powerful than your own attitude and positive energy in affecting your own health. Change your mind, change your health.
I actually intended to write this post as soon as I got home from the hospital, but there were so many things to write about, and I kept putting it off, not wanting it to get lost in the shuffle. I knew I had to be sure to give it proper thought and attention. And now, two weeks have passed since my hospital stay, and I have even more for which to be grateful, even more about which to write. Thank goodness for publishing delays!
I have long paid lip service to the importance of being grounded and in the moment, but the type A part of my personality often thwarts regular practice.
I found myself in tears many times last week, frustrated by the physical and mental limitations caused by my anti-seizure medication. I learned that the medication not only causes mental cloudiness, but also heightened emotions, physical weakness, dizziness, drowsiness, and confusion. I was completely overwhelmed with the most menial of decisions, and here I was, having to make some pretty big choices regarding my finances, belongings (regarding a certain wildfire and possible evacuation of our home) and health. By Friday night, something had to give, and I went to bed with the intention to take care of myself better over the weekend. I would allow my mind and body to rest. I had to.
And Saturday I awoke to a treat. Breakfast on the front porch brought an aerial display of epic proportions by our community of hummingbirds. They made me laugh out loud for over an hour with their antics, cursing and body-slamming each other for space on the feeder. And just as I was marveling in my own, personal, live-action nature channel, it really came to life. Mother turkey came through the yard for the first time with her new family of chicks. Then the woodpeckers started heckling me from the trees. The finches and jays and flickers and crows and grosbeaks and quail and waxwings all raised their voices, spread their wings and revealed themselves. I was laughing so hard, tears were streaming down my face. The message was so clear - the moment is right now, right here. And I stayed put, sipping my coffee, taking it all in, allowing Boyfriend to click away with the camera.
I know I'm not doing it justice with mere words, and the magnitude of the moment wasn't captured digitally, even if I were to post a series of photos or a video. So I'm gifting you with this clip - it's the only thing that comes close to capturing how I felt. So make like Snow White with a smile and a song.