Showing posts with label Dopa PET scan. Show all posts
Showing posts with label Dopa PET scan. Show all posts

7.11.2014

Invisibly Expensive

I'm feeling so grateful to be alive today. For some unknown reason, the sentiment is stronger than usual. It's palpable. It feels good!

I feel like one of the luckiest girls in the world. To have grown up on one of the most beautiful islands on the planet, to wander down to our pond with Kaal watching tadpoles morph into frogs, to collect beach glass on sunny days walking along South Beach. To be influenced by the gracious and reprimanding adults of the community that helped mold me. To learn from teachers who watched me grow from the time I was a toddler, pushing me to always challenge myself, to never settle. To get to experience Costa Rica as an exchange student in high school; realizing how amazingly different cultures are, yet noticing the similarities of human nature. That I was able to travel to Texas for college, experiencing the unique world of Southern Charm. That in my late 20's I was able to explore Thailand with only a backpack strapped over my shoulders. That I was nurtured by Friday Harbor and West Seattle friends who happened to live there, softening the blow of fear as I traveled alone. I was able to analyze who I was, who I wanted to be, what I believed in, and I spent a lot of time questioning the purpose of life. It was a time of epiphanies, of self growth. Then came deep love. True love. The partnering with my soul's mate. Which too soon, came the headache, the demanding of a MRI, and ultimately the moment that turned our lives upside down. That I survived the first tumor resection, then almost died from the blood clot in the tumor cavity. That I learned how to speak again, and read, and write, and walk, then run. That I have survived a second brain tumor, and now I'm fortunate enough to travel for medical care. That I am here, that I'm able to fight for my health. That I currently am without a tumor mass in my brain. It's amazing!  

Last night my buddy Jess and I were laughing about my body. We laughed because Dan and I may not have fancy things, or expensive cars. We don't own a house, or have any assets. Instead, last year alone, we had just shy of $90,000 of medical deductions for our taxes. And that's only the amount that the government recognizes as tax deductable, we had more that we could not write-off. Essentially, in one year, my body cost us over $100,000. It's weird, I'm not draped in name brands, or fancy jewelry, but I probably cost more than 90% of the outfits walking around even the most expensive stores. I am invisibly expensive. Like a diamond in the rough. 

It's humorous, the expense of my body, but at the same time it's kind of sad. I wish Dan didn't have to spend every extra dollar on my health. I wish he could fix up his car, or have a vacation that wasn't centered around a medical shot, or Dopa PET scan. I wish I could give him the wedding he deserves, or shoot, just provide the honeymoon (hubba, hubba). But we will never spend the money. We can't. 

I am deeply happy to be alive, to be able to walk outside and brush my fingertips across our beautiful blue hydreangeas, or kneel down to trace the back of my had across our soft lambs ears (yes, yes I know, technically they're weeds, but the bees and butterflies love them so much). I'm am immensely grateful to be alive, and when I feel disappointed by the inevitable burden that is placed on Danny and my parents (who provide the venom and help with the cherry sales and many things during surgery times and so much of my emotional support), I try to remind myself that we can always get 'things' later. That life won't wait. That my medical care isn't an option. We work so hard to get to the place that most people take for granted. It's not their fault, it's human nature. Young people aren't supposed to get sick. We're supposed to hearty, and healthy and invincible.  

When I feel sad about the things that Dan doesn't get to do, or how his life is changed by my health, I try and picture myself on the west side of the island being whipped by the salty air, or I anticipate the sweet scent of native blackberries that will permeate the air very soon. I just change the subject, and hope that my health will continue so that burden of me, and my care, will lessen. That someday we will be more normal. To not have such financial demands. That I will be able to someday fulfill Dan and my dream of owning a home, and for me to bear him children. It's scary to dream, especially in a world like ours that is so fluid, and unstable, but if you aren't dreaming, then you aren't living. And if you aren't living, you're just not dying.

Here's a delicious drink I created yesterday on my quest to survive this Seattle heat spell. My favorite part is the froth on the top, but if you don't like that just give it a quick swirl with a spoon before you poor. This is not a smoothie, it's light, and meant to be poored over ice.


Kale Cooler

1 liter coconut water 
1/2 cucumber (with peel)
5 large kale leaves (stems removed)
1 celery heart & leaves (I eat a lot of celery as snacks so I keep the hearts and leaves for my smoothies.)
1/3-1/4 cup mint (stems removed)
1-2 inches of ginger root (peeled)

Here's the nutritional information for the whole pitcher: 


The total calories for the entire pitcher: 348. You can add extra water to dilute and the concoction will go even further. I like to drink a full, regular glass, then I keep filling the cup with water because it retains some of the green goodness as flavor.

Don't just not die. Do something that makes you feel alive today. 



6.18.2014

UCLA Results

finally mustered the strength to call UCLA for my MRI results. They agreed with the UW radiologists that there is no visable tumor. The fun twist is that instead of automatically planning my next MRI with a Dopa PET at UCLA in October, they recommended that I just stay here in Seattle. If the Seattle MRI shows up questionable, then I will need to fly down for a Dopa PET. So now, all I need to do is keep fighting, stay healthy, and have no new growth in October. Not having to fly down to UCLA would be a huge relief, both financially and emotionally. 

Flowers from Danny after the good news...


My brain is still hazy and slow after my seizure, so this is all I have in me to write. Like an earthquake, there are aftershocks of energy throughout my brain and at times it feels touch-and-go so I really need to force myself to rest. As it always is, I know the threat will subside the longer I make it from the seizure. I just have to be patient.

For now I will relax, falling asleep for my nap with relief, and a smile. I can deal with seizures for the rest of my life, I'd be happy to. Compared to the tumor, they're just like gnats. Annoying, but I can live with them.

10.05.2012

Possible Exclusion

When I can't sleep, I read about the success of my chosen treatments. Whether it's the results of the current dendritic cell therapy trials at UCLA (around the US, or even the globe), or the supplements and how they selectively induce apoptosis in glioma cells. When I'm afraid, I read. Last night, while trying to get more information, I stumbled upon the Exclusion Criteria for my clinical trial and right up there, first on the list, #1.......Subjects with an active infection.

AAAAAH!!!

My temperature is gone, my throat still hurts but it's getting better. I have been sitting on my bum or sleeping. This is so frustrating! The whole point of this trial is to train your immune system to attack the tumor. If my immune system is down the vaccine will not be as effective, perhaps not effective at all. I understand the exclusion, and that means I have to get my act together. Looks like I'll be laying low. I even asked Dan to pick me up a face mask for my flight. Yep, I'm going to be one of those weirdos that will be wearing a sickie mask, the bird flu kind, it's ridiculous. Oh well. Gotta do what you gotta do.

I'm sorry if I'm not returning very many texts, emails or phone calls. It's not that I don't think about all of my amazing friends - I do! All the time. It's one of the things that keeps me going, remembering all of the laughter, and fabulous ridiculousness of my life. But, it's true what they say, when you're fighting a beast like cancer you have to focus your priorities, and although I wish it wasn't the case, I have to focus all of my energy on resting and preparing for my trip. I'd rather be running the lake, going to dinner, or having a glass of wine with my girlfriends. Actually, I'd probably rather be doing ANYTHING other than preparing for another brain surgery. I can't think of much I would like to do less than a brain surgery. I only have so much energy at a given time, especially when a treatment is around the corner. I imagine it's like being a mother of young children. Your children have immediate needs and they can't take care of themselves. That's like cancer. All of a sudden, at times, everything else in your life falls by the wayside. I'm sorry that I'm not a very good friend right now. I hope that you can forgive me. I read all of my emails, text messages, etc., and I appreciate them so much, I just might not be able to respond.

On Tuesday, I got a copy of the only photo we have of Dan and I at Dallas & Kelley's wedding in Chicago. I think I'm so nervous to see what I actually look like in full shots that I've stopped taking them. I need to get over myself. It probably sounds weird, but I feel happy and healthy and I don't want to be analyzing my appearance, which I tend to do. Sorry it's a little bit blurry, Jen's daughter Kai took it :) I find it absurd that I can get caught up in such trivial things when deep in my soul I know I have a serious issue. I'm a contradiction of survival and vanity. It's confusing and embarrassing at the same time. How can a girl who has her life on the line be concerned about her looks, about material things, surface stuff, or image. I'm an anomaly to myself. I guess, in the midst of all the craziness, I still want to be a woman who's attractive and put together. To look as good as I feel.


I'm juggling a lot of things emotionally, physically, even spiritually. It's weird to ride the waves of cancer. One fabulous note that I realized I haven't shared, is that after April's MRI, my parents sent a copy of every single MRI to an independent radiology reading center. They did not get any extra information. They did not get my pathology or diagnosis. They didn't know the names of my doctors, or the treatment that they were recommending. My parents did it behind my back and just recently told me the result. The specialist who reviewed all of my MRIs said that my tumor has not grown.

I'm not sure what the deal is with the University of Washington and their radiology department. Do you remember when I talked to my doctor about how my radiology reports from the MRI readers stated that the tumor had not grown, yet my doctor and the nurse were trying to prove to me by measuring the tumor at my appointment to convince me to do radiation? What the heck?!? Or what the HELL is more appropriate. Please beware of my story. I have the top radiation oncologist at the UW who also teaches at the college and works at Seattle Cancer Care Alliance. I have no idea why there would be a discrepancy between those who read my MRIs and my doctor, but something is very fishy. I'm just grateful that I did not listen to my doctor. My brain would have been long fried and who knows how badly that would have turned out. I'm not necessarily against doing radiation but I would want to do it as a last resort. If my protocol is working, why beat a sleeping monster with a sledgehammer. Just tranquilize it.

So far, from October to April I was able to stop the growth of the tumor. I skipped the MRI in July due to the attack, so six months will have passed when I have my MRI on 10/15/12. Hopefully, I've been able to continue the trend, maybe even reversed it some. Anyway, I just wanted to share that information about the MRI readings. It is so important to analyze the information. It is imperative to get copies of all of your reports and look at them yourself. And if something doesn't sit right, pay the extra money and get an independent review. The worst case scenario is that you might be wrong. That you should do what your doctor is telling you. That you might be back at step one and out a little bit of money. But so what. At least you'll know that you checked your bases. Be strong, and follow your gut. Take whatever little energy you have and put it toward advocating for yourself. Don't just follow the cattle chute. You are the only one who can find the best cure for your body. There are so many successful treatments and there is no doctor in the world versed in all of the options. Be your own general manager, please don't be afraid of taking charge, and sometimes that means giving leniency to those on your team. Back in April I told my parents that they could solicit reviews of my case from other sources, I just didn't know that they were going to go through with it :) 

Thanks mom & dad for doing that review behind my back. If you have someone who can take the hits for you, double check things, etc. it's nice to not have to field the blows all the time. If the news was bad I would never have to know, but since it was positive it ended up being a gift. They knew that I wasn't going to do radiation anyway at this point so they felt no need to stress me out or fire me up right away. They waited for the right moment, once my mom had a martini in her :) She and I are open books that way. So there you go. A huge blog today, I guess I had a lot on my plate and it feels good to get it out. I fly out on Monday, and on Tuesday morning I have my Dopa PET scan to make sure that I actually have tumor tissue not just scar tissue. Let hope for a miracle! I probably won't know the results until the 16th. Of course, I'll let you know as soon as I can. Love to you all!

7.09.2012

We're Back!

Sorry it's taken so long to post. We're finally back home, and semi-settled. We're still waiting for UCLA to schedule the Dopa PET scan, and Functional MRI - apparently, my insurance is baulking. Eventually, I'm sure it will all work out, but in the meantime I'm excited to be home. I missed Bingie our cat (Emma's with Grandma Linda). 

I'm excited about the possibility of the vaccine, and hopeful for the future. My pill schedule had increased to 100 pills a day - that's too many! It has been exhausting, and very limiting.

I'm so exhausted that my brain feels slow.

The view from our home away from home, Dave & Sally's in Manhattan Beach.








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