UCLA Tumor Board Results

Dang it if brain tumor life isn't confusing. At least in my world! I can't be the only one who has these types of yoyo results. I mean, it's better to have differing results than a truly horrible, obvious situation. The ups and downs, though are insane. 

If you don't want to watch the whole video (3 min 44 sec), the short is: tumor is growing, albeit slowly. (Think millimeters.) I believe the two treatments I added in the past two months, are helping - who knows, maybe the tumor had grown more in the interim, and now they're even shrinking it? Who knows! I rule out nothing.

My neurosurgeon at UCLA offered a brain surgery to remove whatever she can, or she said she is "comfortable" waiting 2-3 months for another stealth (pre-op) MRI. I opted for the latter, and agreed that if I had furthering symptoms, I would move up the scan.

Some people might think I'm crazy to push-off brain surgery, since I have a growing tumor in my brain, but there are inherent risks involved. Remember when I had to learn how to walk, talk, read - learn the alphabet again?! I do. We will never know for sure if the decisions that we make are the best ones, but a decision is what we have before us. For now, we try to do the least invasive approach. If that isn't enough, we will evolve as we always have.

It's confusing because the symptoms of my seizures are the same symptoms that tumor growth would cause. The main take away right now is that it's important for me to stay the course on exactly what I'm doing treatment-wise, and perhaps even add a few non-toxic, whole body health boosting things. And I really need to lower my stress levels. They directly cause extra seizures, and that makes diagnosing possible tumor growth, very difficult.

With all that being said, I should go to bed. I have a big day planned with a bunch of friends tomorrow. We're doing a nature hike in an old growth forest. I'm so excited! I'll be sure to hug some trees for all of ya. ;-)

Water-Only Fast = Seizures

Oh fudgeknuckles. I did it again. The thing is, you'd think I'd remember that I have stress-induced seizures, and here I was doing a several day water-only fast. And the whole point of a fast is to stress the body so that it cleans out damaged cells. Stress, the word is written directly in the description. Fool. I always think I can handle more than I can. But the payoff (a completely regenerated immune system) was so great that I had convinced myself that I could handle it. I believed that I could make it three days and that it would be great. 

But that's not what happened. About two hours after that last post, I was waiting for the iron to heat up to press Dan's shirts, vacuuming the house to kill time, when I started to feel off. I told myself that everyone doing a water-only fast feels off, but I still made my way to the kitchen to eat the second half of my papaya. What I noticed first, was that my right hand and arm were icy cold, and I was having a hard time spooning the papaya meat. I thought to myself that I needed more fruit, that I didn't feel well but needed something gentle on my stomach, but we didn't have anymore. One trick from my doctors is to eat something sweet when you're about to have a seizure, I guess it's supposed to help slow the onset, or perhaps even lessen the intensity. When I have my stress-induced seizures I'm typically hypoglycemic (another reason that I've come to reason why I probably shouldn't fast). I've checked my blood glucose levels a few times just before seizures, knowing I wasn't feeling well, and it's always in the 40-60 range. This time, after having eaten the rest of the papaya I was at 69. Even with the symptoms, I was surprised by the number. I guess I should take that stuff more seriously.

After eating that final half of papaya, I didn't have anything sweet in the house, that I could think of, until I remembered my mom's cherry bourbon jam. It was a miracle that I got that jar open. (I live with a man with the grip of a giant.) I spooned out a bite, then realizing that I was out of my seizure pills, I walked to the bedroom to lay down. Looking back I knew it was coming, ultimately, from the time of the second half of the papaya, but kept pushing to check my blood glucose and get that jam. I wanted ice water too, but knew I was about to hit the floor if I didn't just give up, and retreat to a safe place. It was so cold in there, probably low 50's (we don't have central heat), that I had to get back up and turn on the wall heat. As I laid back down, shivering, I kept thinking, "Breathe. You're fine. You can get through this. This is no different than normal, other than the lack of pills. It won't change anything. Deep breaths." And as the pins and needles in my hand grew stronger and creeped up my right arm, hot tears dripped down my cheeks and landed into the basins of my ears. I stared at the ceiling as things progressed, ever more painful as it reached my shoulder, then my face. When it hit the top of my skull I could have thrown up from the inner hammering, but I was too distracted. I realized in that moment, that there was nowhere else for the energy to go but back into my brain. For many, these seizures often progress into Grand Mal seizures, or turn into a series of episodes. I braced myself. Already it was the most aggressive seizure since my onset seizure back in 2011, a Grand Mal while driving. Usually the tingling stays around my hand and arm, but this one kept progressing until it had engulfed my entire right side. And it hurt, oh God did it hurt. In unchartered territory, I didn't know if I was headed into a more scary state, loss of consciousness, vomiting and choking to death, losing control of my bowels or bladder. I new I was helpless, so I kept taking long, slow breaths. 

As I braced, I twisted my neck to feel the cool pillow on my right side (that half of my body was on fire to the touch). In that moment, the coolness soothed my face and my mind and I had the sense that it was going to be okay. Under my breath, I began whispering over and over and over, "Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you."

As the seizure subsided, the pain continued to surge, but slowly lessened into a deep monotonous throb, both down my arm to my hand, and throughout my brain. Usually my seizures don't cause that kind of severe headache.

Not feeling well, still reeling, and aware of the seizure activity swirling in my body, I knew I needed more lorazepam, and I needed it soon. I called Emma into our bedroom (she's not normally allowed - she sheds too much) and asked her to come lay down on our bed to keep me calm. I've read that petting animals soothes the brain. I then called Dan and let him know the basics. He was headed home anyway, so that was handy. I then set down the phone to rest, just talking on the phone seemed to re-trigger the seizure energy in my brain. It was too hard to think, to talk. But I was scared, I knew I needed more pills, but Dan was driving, and I didn't want to bother him. I didn't want to put him in danger, knowing he was probably already speeding to get home, I wasn't about to add a phone call while driving to his tasks. I took several breaths and called my parents and gave the cliffsnotes of my dilemma. They asked for my doctor's name and quickly told me to hang up, that they would handle it. 

For the next 15-20 minutes I went in and out of various states of nausea, and tingling, and shivers, and hot flashes. I remember wondering if I should go find my empty lorazepam bottle and lick the old dust particles for some of the microscopic relief, but it seemed like too much energy to muster. The pain never went away, but did eventually subside. Danny was able to pick up the prescription, the one my parents were able to get renewed, I took a Lorazepam and everything eased up from there. The headache remained for the rest of the night, but I didn't have anymore seizures.

Needless to say, Friday was eventful, and perhaps a clear sign that I'm not meant to challenge my body with several day water-only fasts. Not as a person with stress and hypoglycemic induced seizures. You'd think I would have assumed it before engaging, but it never seems to get through my thick skull (not even through the surgery cracks) that I am not normal. I have special needs. I like to believe that I'm just like everyone else, but it isn't the case. One of these days, I have to accept it.

It's All About Images

Good morning. Sorry I haven't written in a week, I've been dealing with a horrible reaction to one of my treatments - cystic acne. GROSS. It has been all over my entire face, and one of my saddlebags. (How is that even physically possible?!?) It was absolutely disgusting. I've since kind of gotten it under control. My friends didn't believe that it was that bad (apparently I'm always saying that my skin's broken out when I only have a zit or two - whoops, the girl called acne too many times) so I had to send them pictures. And finally, with solid proof, they relented, agreeing that my breakout was major.

I had been dealing with acne for the past month, and I wrote it off as stress related, a disappointing side effect of MRIs. But as it continued to worsen, even after the MRI, I realized that I needed to reevaluate the issue. First, I stopped all treatments except the blue scorpion venom. Then I looked back to the times I started various supplements, and I talked to Dan, analyzing if we remembered any bouts of acne. Finally, looking back to my log book (which is not as thorough as it should be, but still quiet helpful) we pinpointed the PolyMVA as the most likely culprit.

I also wracked my brain about any changes in cleansers, laundry detergents, etc. but nothing had changed. I started looking into the PolyMVA and read that it is comprised of a variety of B vitamins like B1, B2 & B12 (and some other antioxidants). According to what I've read around the internet, B12 stimulates sebum production (the oil on our skin) and excessive sebum is what causes cystic acne; it's what clogs the pores. Some people with even the slightest supplementation of B vitamins breakout in pimples, and I was doing major doses. Anyway, I'm sure you guys don't really care about acne, but I'm telling you the acne on my face was debilitating. I didn't leave the house until yesterday. Almost a whole week. Man, I'm vain. But seriously, my face literally hurt, so it wasn't actually purely about looks. I talked to another BT (brain tumor) friend who has been taking PolyMVA for, gosh, I think a year or two and she has never had any problems. But each body is different, and each body's needs are different. And I have exceedingly sensitive skin, it's practically impossible to please, so even the tiniest of adjustments could lead to a nuclear situation.

So how did I fix it? Well, I still had several days worth of Accutane, so I started taking those again. Accutane dries up sebum production. I also started putting tea tree oil on my face, a more natural way to do the same thing. For the first few days, it was not getting better, and I was frustrated, discouraged. Good thing my parents were headed over for the West Seattle all school high school reunion Friday, and my dad's 50th for West Seattle on Saturday, and mom packed the big guns for me. Gotta love moms, they're always saving the day. I've been terrified of chemicals, never knowing what contributed to my cancer, so I try and do things naturally, but sometimes in order to get things under control you have to make a deal with the devil. It took several applications of Retin-A, and several applications of Benzoyl Peroxide. Both, I believe, are known carcinogens (at least in some countries - our country likes dispute carcinogenic claims, even when well documented). But I HAD to. I have pictures to prove how disgusting it was, and I don't want to show you, but at the same time, you almost have to see how disgusting it was to understand. It's embarrassing when your skin is rupturing. It's your shell, your image. It implies that there's something fundamentally wrong with you. I'm trying to live as a vision of health, so when something like this happens it shakes you to your core. You feel helpless, disgusting, like a failure.

Okay, I can't do it. I can't move myself to upload the photos, or even one of them. I'm too embarrassed. Too proud. It's weird, I mentioned this to a friend a few weeks ago, that although I'm married, and fighting cancer, I still want to be seen as attractive. There's this thing that happens when you get diagnosed with a "terminal" cancer - maybe for any kind of cancer, I don't know - people love you, so they feel bad for you. They may not describe it as pity, exactly, but you get tossed into a different category. Almost ambiguous, and asexual. People see your trials, and know your struggles, what you're working with, and you become less human. Or too human. You become either too vulnerable to tease and flirt, or you become too scientific, too medical. Of course, here I am blaming everyone else, maybe it's me, maybe I'm just too serious. That I'm different. That's possible. I've talked to others though, in my position, and there's definitely a divide once you're diagnosed. People don't know how to handle us. It has to be awkward, I guess.

Regardless of all the above written word, I have to say that acne - although frustrating - is a great issue to have. Acne is fixable. Just a few weeks ago we were worrying about radiation, clinical trials, discussing what we would do if the tumor was back. And I wish I didn't care about being attractive. Dan has always found me sexy, even when bald and simple minded, that should be enough. Who cares what other people think? Right? I don't know why it isn't just that simple. Ego? That's embarrassing to admit.

Here's a much cuter picture than me, it's my father's senior class photo. Isn't he adorable?!? Man, I can finally see Kaal (my brother) in that face. Crazy how we grow into our parent's images. Pretty cool.

My First Article

I'm back home after a week on the island (Friday Harbor). I'm sorry for not contacting people. Sometimes I become overwhelmed by going home. There are so many people that I would love to visit, and since I can't contact everyone, I often end up hiding out. Of course, I can't drive anyway, so that makes it easy to hide.

It's nice to be back. I just did my 40 minute workout - 30 minutes of running with 5 minute warm up and 5 cool down. I didn't feel like working out, but I told myself, now that I have a treadmill in my living room, I need to take advantage of the opportunity.

While I ran, listening to my MP3 player and watching the Jets come back against the Texans, I thought to myself, "I don't live to run. I run to live." What a crazy concept. I'm literally running to defeat the grim reaper. Of course, most people work out to be healthy and live long lives, but I truly feel a responsibility to exercise. While I was on the island I went for a few walks but I didn't run. I was scared to run on the road and go too far from the house. I was worried about having a seizure and not having someone help me. It's these little fears that make me frustrated. The seizures are real, in fact just as I was running on my treadmill a few minutes ago, I had to stop and get water because my right arm started slightly tingling. After I had some cold water it was better. I only had five minutes left of running so I just dialed down the speed. I thought it was important to finish my goal, to set a precedent. It's hard to know when to push and when to back off. I don't want to be a woman living in fear. I want to conquer mountains, not lay on the couch. At the same time, out of respect for everyone who loves me, I have to sleep a lot, and take it easy. Stress and sleep are the #1 killer and #1 healer for brain tumor function, respectively.

My life has changed so much, each decision, every activity. I have to weigh each choice so much, then re-evaluate. I can't just open the door and take off for a jog. Sorry if it sounds like I'm complaining. I know it's not the end of the world, I'm just trying to navigate the new rules of my life. 

Earlier today, as I was watching the national news, a girl was talking about her addiction to sun tanning. She has skin cancer, and yet still tans. She was giggling, and shrugging her shoulders as if to say, "Yep, I'm crazy, but hey, I'm hot." I was shocked, and it really got me thinking. What are people really willing to do when they get diagnosed with cancer or other illnesses? Shoot. I'm afraid to color my hair because of the dye, and here's this crazy girl tanning with cancer. I wonder if beauty can be an addiction? That reminds me, I need a hair cut. I've only had two hair cuts since the brain surgeries. I'm nervous to have someone deal with the scar. It's such a private, graphic, intimate look into my life. It's hard to be that vulnerable sometimes.

On a side note, I my first article was published. If you're interested, you can click on the following link:

Island Guardian
http://www.islandguardian.com/archives/00004017.html