The Time Will Come

I'm grateful for so much each day. Things pop in my head, and then I start smiling. It can be as simple as, "My house is so rad. It's full of daylight even when it's rainy outside!" Lately, though, I've been going for the big ticket items. My mind has been full of happiness thinking about how wonderful it is that I haven't had a seizure since August 5th (the day before my birthday - I was probably just too excited!). I haven't taken anti-seizure medicine since September 27th. And, biggest of all, as Danny and I were running errands today, I realized that I could have just finished last week as my first week of radiation, but instead, I'm happy and healthy and trying to kill this brain tumor with alternative means. I realize that I might have to do radiation (eventually - if there is no other option, and it starts completely growing like an even nastier weed), but right now I'm enjoying the ability to take this into my own hands.

Yesterday, my parents, Danny and I met with the other brain tumor fighter that has been taking the artemisinin. We met with her and her husband and we shared notes. We talked all about the different protocols, the different research out there, and we reviewed both of our pathology reports and all of our MRIs. It was fantastic and incredibly inspiring. Our friends have managed to completely shrink her brain tumor through alternative means. It's unbelievable. Although we had never met, there had been email after email for the past year or so. We combined heads and together, I feel like we can conquer this.

At first I was very concerned because there are so many different types of stage 2 astrocytomas (which we both share), I wasn't sure if we were matching apples to apples. But after sharing our pathology reports, our friend has the same type, along with the "negative for loss codeletion of chromosomes 1p/q 19p/q (can't remember off the top of my head which one has which letter). Anyway, my point is that I have those two chromosomes, as does my friend, which means that our tumors are more aggressive and signify a shorter lifespan. Anyway, after watching her scans, and seeing her brain tumor shrink and shrink, scan after scan, I knew that things were looking up!

Maybe surviving a brain tumor isn't just about luck, or fate, or genetics. Maybe, just as I was hoping all along, it might be treatable or even curable by using healthy choices, and by following herbal research. There just might be a way to treat a brain tumor with diet and supplements. Sometimes the supplements are in massive doses, but who cares! It could slow, halt, or kill the tumor. Wow. This is so big. I just have to keep positive about this process. I'm taking the safe side, unlike my friend who took some pretty substantial amounts (with no serious side effects), but I figure I can still up the ante at my next MRI if things aren't up to my liking.

I'm just so grateful to have this opportunity to squish this with healthy means. I'm forever indebted to our dear friends.

It is going to be so hard to wait for my next MRI in January. I want to start seeing results now! I keep telling my overzealous soul, "Patience little friend, there is no rush. Enjoy each moment, each day, each kiss, each hug, each laugh, each smile, each apple, each salad, each green smoothie, each new smell. The time will come." Each time I have to tell myself that little mantra, my core warms, my cheeks get rosy, I start smiling, and I feel lighter than air. It's the best. It's my favorite problem to have :)

Truly, how wonderful is it that I am not headed for week two of radiation in the morning. HOW WONDERFUL!!! ! ! I know my oncologist probably thinks I'm stupid, but I don't care. This is my body and my life. I will not give up on it, or take the easy, less effective solution. I will fight, I will laugh, I will live, I will not give up.

Tapering Off

Today is the first day that I'm not taking an anti-seizure pill (although I have to take one tomorrow). YAY!

Let me explain. Originally, I was prescribed 1000mg of Divalproex a day. Last week, I only took 500mg per day and now, I'm down to a pill every other day for the final week. By next Monday I should be done. I'm FREE! Hopefully, not only prescription free, but also seizure free.

I want to thank my friend Nancy who is a pharmacist. I was adamant to get off of the medication, and my nurse at the UW, as soon as I told her I was not going to follow her standard of care, never again responded to my emails for a taper down schedule. So, Nancy helped me plan a tapering of the drugs and I really, really appreciate it.

I have been incredibly fortunate to have so many people helping me throughout this journey. At each turn, I get great support.

I'm still scared to have a seizure, but each time the fear creeps into my mind I take a nice deep breath, and exhale slowly. I will not live in fear. I will not take drugs that wreak havoc on my body and mind. I will not give up. I will not just do what the doctors tell me to do. I will make my own decisions. I will research my options. I will try to keep my care natural. If my health deteriorates, I will reevaluate.

I'm Becoming A Mossback

Well. Things changed again. I never started taking the new pill. When we picked up the new prescription the woman behind the counter said, "That will be $192 please." I looked at her wide eyed, and quickly asked her if I HAD to buy it. Fortunately, she was incredibly kind, and said absolutely not. She recommended that I contact my doctor and ask for a different, more affordable drug (for the record $192 was just the portion that I had to pay out of pocket, the full price tag for the drugs for those without insurance was almost five hundred dollars. Yuck).

I have yet to contact Dr Graham. I'm so over this stupid anti-seizure debacle. It's never ending. Right now our lives crazy anyway. I'm sorry to drop this news over the blog instead of talking to everyone in person, but it's too hard to contact everyone. Danny got a job back in the elevator/escalator trade so we're moving back to Seattle! It's a fantastic job, and I'm excited to watch this next phase of our lives unfold.

Within the past five days Dan got a job, started safety training, we researched places to live (we already knew the areas we wanted to live), found the perfect place, and signed a lease. We move in on October 1st. It is a 6 minute walk from our new home to a PCC Natural Market. It's also a fifteen minute walk to the library. To save the best part for last, we will be living one block from Greenlake where we can walk on the trail. We get to have our dog Emma, and cat Stella. It's very exciting! Obviously, it's going to be incredibly hard to move away from my parents, and all of my amazing Wenatchee friends, but we will come back to Wenatchee often, and our friends will always be welcome in our guestroom.

It's going to be a healthy lifestyle change for us, this new move. I'm trilled that we have the opportunity to walk for groceries, and books. I can't wait to link my hand in Danny's, grab Emma and walk on the lake path. Our new little home has a communal garden which I can weed and eventually contribute to, and I'm thrilled to learn about the plants living on the wet side of the mountains, it's a whole new zone. This home is such a gift! What an amazing opportunity! Now I will be able to walk everywhere. I will have foot freedom!! WOO HOO!!! I had been very isolated since I could no longer drive. I feel a huge weight off my heart. I'm ready to explore and test my limits. Maybe, eventually, I'll even find a way to get from our place to my oncologist's office through the bus routes. I've only ridden a city bus once (thank you Auten, that was fun!), but I want to become independent again. As long as I don't have a stinking seizure in public. That would be embarrassing.

As for the anti-seizure medication challenge, I'm taking a break. I'll still keep taking my current drug to appease my oncologist, but if things worsen I'll contact her and try again. It's tough. Danny and I talked about the whole medication issue again last night and he strongly feels like my current drug is not a viable solution. But what do you do when things are so busy, life is changing quickly, there's packing to do and a move across the mountains. We still need to maintain daily life, and I feel like on this medicine alone I'm barely keeping my head above water. Additional medication might cause me to sink. Sometimes it's simply a fact of bad timing and if we do too much at once, at this point, I might explode. I guess Divalproex is going to have to be a stop-gap. We will revisit the anti-seizure medication next month. In the meantime I think I'll try to do some extra meditation. It couldn't hurt.

Meds Meds Meds

Sorry it's been so long. Our lives have been nuts. We've traveled from Wenatchee over to Seattle, then back to Wenatchee and then within 24 hours we headed back over to Seattle where we've been for the past several days. We're trying to get my anti-seizure medicine dialed in. Our first appointment was with a neuro-oncologist, and she seems to be incredibly kind (we had never met her before). We talked about the different side effects from the medicines and they all have very similar problems. Mainly depression, suicidal thoughts, suicide attempts, irritability, anger, panic attacks, violent attacks, frustration, exhaustion and weight gain. Of course, not all of the side effects occur in all patients, but I hate that I see several of them in my current drug and feel them in my daily life. It makes me feel trapped in my body. In the appointment we talked about the other anti-seizure medicine that I took before and after the brain surgeries, Keppra. I had forgotten the name, but I was quickly reminded by Danny that the drug had the same side affects as my current drug.

Anyway, Dr Graham (my new neuro-oncologist) prescribed a new drug and we went to fill it. After having read all of the paperwork I started freaking out. The drugs are so strong, and I would have to stay on my current drug for two months while slowly increasing the new drug. Double medicine? Seriously? I can't even handle my current drug! After the two months I could decrease the amount of the old drug.

The worst part though, is that the new drug carried an even more severe side effect on top of my current pills...if I was to notice any type of rash on my body, or sores in my mouth, I had to stop taking the drug immediately. The irritation showing the fact that it was causing my immune system to fail which could kill me. This drug literally can lead to death. What is more stressful than that?!? It's the whole thing I'm trying to avoid! Why in the world would I risk my health just to stop a seizure or two? I don't care if I never drive again, I don't want to take these stupid drugs! The neuro-oncologist took this side effect quite seriously, in fact one of her other patients called it "The Death Rash." She was teasing, but I believe there's always a percentage of truth in each joke. When we were leaving our appointment, Dr Graham gave her personal pager (for use day or night) for immediate contact in case the [death] rash occurred. Exactly what you want to hear when starting a new drug.

Later that night, Danny emailed Dr Graham, and we decided that this is the wrong drug. I told the doctor that I hate taking medicine already, I don't do well with extra hormones or medications of any type. I feel crazy from these stupid anti-seizure pills. Anyway, I told her I would be willing to try one more different type if we can get started within a week, but I'm not willing to wait for two months with progressively negative side effects. I feel like I need the benefit of the pills to out weigh the cost and at this point they certainly do not.

So, today I will start taking a different, newer pill on top of my current pills. It will be bad for a week and a half where there's an overlap of drugs at which point the old drug will be weaned off. I will be doubled up with side effects so I'll probably be a raving lunatic that wants to snap puppies necks. This is the last chance cafe for my neuro-oncologist to trick me into ingesting these poisons, after that, if this doesn't go well, I'm just going to risk it. Forget the anti-seizure medication. I don't need to drive, I can swim in the kiddie pool, etc. I'm happy that Danny and my family give me full support to make my own decision. They've seen the side effects and they are completely on board. In all of this craziness, their support puts a smile on my face, and with this drug that is definitely a difficult task to accomplish.

MRI & Seizure Changes

Here we go, I borrowed danny's fancy phone, and i'm punching keys like a two fingered sloth.
The mri shows some new growth. They're not going to radiate right away though.

Due to the seizure, my license has been revoked. I can not drive for six months. I have to show zero seizures for six months. If i have one, the timeline starts over.

I will be on antiseizure medicine for the rest of my life.

No swimming either. I have to get used to having all kinds of limitations.

I feel bad. This past weekend danny and i signed our marraige certificate just in time for my body to start falling apart. Now i wont even be able to go visit him.

Things can sure change quickly.

Maybe i need a Rascal, you know those little wheelchairs? I don't know how else im going to survive.