Monday, September 30, 2013

Busy Bee

Just got home from my first hyperbaric oxygen treatment. It was AMAZING. I know the research out there pairing it with cancer killing can be very subjective but I don't care because it felt like an hour long meditation. What's good for the mind is what's good for the soul is what's good for the body. Below is the exact HC I used. 

The conference on Friday was fabulous. (In general, life has been superb.) Cheryl Broyels is an angel on Earth, witty, and gentle. I wish we were neighbors and could spend more time together. Tied in 1st place (next to Cheryl) is the ever impressive Dr Ben Williams. Holy cow is he a hilarious, intuitive, rogue cancer fighter. I respect and admire his no-holds-barred attitude when it comes to tumors, treatments, and doctors. He has such an honest view on life, I deeply enjoyed spending time with him! Again, if I could just be bookended in the neighborhood by those two, I would be a very, very happy girl!

At the conference there was also quite a bit of self promotion by doctors. I guess it comes with the territory, but nevertheless I was thrilled by the chance to attend the Chris Elliott Fund conference. It was a very small group of fighters and caregivers, and scanning through the crowd, seeing the various scars on the fighters' heads, gave me an unexpected feeling of belonging. Throughout the conference I had a baseline feeling of gratitude that I don't have a glioblastoma,  then, I kept oscillating between excitement (because of new knowledge), fear (the lack of new treatments), and regret (for not having worked harder to kill my tumor). 

Have you seen the tooth whitening commercial that states, "If you're not whitening, you're yellowing!" It's a very effective slogan. It always reminds me that if you're not researching and implementing new treatments to your protocol, you're missing out.

On Sunday I drove the car four blocks to PCC to pick up my buddy Jules from the bus (it was raining sheets). It was so fun!! If you look at the picture you'll notice that even my double chin was having a blast!  

While we cheered on the Seahawks (what a game), we sipped on our aptly named, Hawks Detox Smoothie...


Thursday, September 26, 2013

Oxygen and Experts

You know when you meet someone, and spend a little time together, and you get that sense of kismet? Well, that's how I felt when I met Mackenzie, my colorist. And guess what she did...she clued me into an exciting conference happening tomorrow in Bellevue. The keynote speaker is Ben Williams, PhD, a rockstar in the brain cancer world. He's a man who cured his glioblastoma well over a decade ago by doing a variety of standard treatments, off label drugs, and supplements. There are, I believe, seven different speakers, and two different video chats (one with my new nutritionist Jeanne Wallace, PhD and the second with Dr Charles Cobb - the man doing the research with Valcyte). I'm very excited to learn about the most up-to-date drugs, treatments, and all-over care. The conference is an all day affair, starting at 8:00 am until 5:00 pm. The entire thing is free, and they even provide lunch (can't wait to see what they nutritional voice is skeptical, yet hopeful). Unfortunately, since it's happening on a Friday, Dan can't join me, but my parents got really excited and asked if they could drive over from Wenatchee and come with me. I guess it actually works out pretty well since my parents don't work on Fridays anyway, and it will give me an excuse to give them hugs. If you want to attend, check out the Chris Elliott Fund website, they are hosting. I just can't believe how fortunate I am that I get to attend this, and meet so many influential people in the brain cancer network. This. Is. Huge.

I'm so excited about this!!! It's going to be exhausting, and I'd better record a bunch of it or I'll forget most of it (maybe they'll have transcripts later?). I just love it when people send me information about brain tumor stuff, I am SO grateful. It's impossible to keep up-to-date on all the goings on. I feel like I have all these helpers, like an army. You guys are like my own brain tumor seals, or those super awesome reconnaissance peeps. That what's you guys are. Totally stealth. Totally amazing.

Also, I am very excited to share that I have my first hyperbaric oxygen session on Monday. I will have three consecutive sessions on three consecutive days, then the following day (Thursday) is my Dopa Pet scan and MRI scan down at UCLA. The oxygen therapy is very exciting. Cancer hates oxygen, so the more oxygen you take in, the more you starve the cancer. That's one of the reasons why walking, and meditation are so beneficial. Mentally, I'm looking at my sessions as lung massages. Very fun! Even Professor Seyfried touts the benefits of HOCs along with a low carb diet.

One Example of a Hyperbaric Oxygen Chamber

Ok, I'm off on my walk to the blood lab again, apparently they didn't draw enough blood for all of my panels the other day. Ugh. More needles. Oh well, at least I don't have to pay for their mistake. Well, I guess my veins have to pay for it, but whatever. Not the end of the world, and I guess it forces me out for a walk, so maybe it's a good thing. :)

Monday, September 23, 2013

I Love A Good Pun

After a billion phone calls, and emails, a few dialed-in dates, then a few fall-throughs, we have solidified all four UCLA appointments. Phew! Now we can book our flights and figure out where we're staying. Dan insists on taking off work to join me, which is going to be really nice. Just holding his hand lowers my stress levels. 

Also, today, my aunt Anne took me to a new dermatologist. (I like to shop around for doctors as you well know.) I really liked this woman, but of course she found five new moles that she wanted to biopsy. (I politely declined.) I don't know how to handle this new world of skinning people alive. Is it necessary?

Truthfully, I can't take on another area of my life that demands so much attention, it's frying my brain. I think I'm going to table the whole "mole" situation for a bit.

When I got home from the dermatologist, and spent some time with my badass aunt, I noticed that my blood results were back. Things look mostly good, except for high serum phosphorus and low serum alkaline phosphatase. Oh, and of course a maddingly high cholesterol level. What the heck?!? Apparently that whole low carb thing didn't make me immune as the experts say. Bollocks. 

I'll be talking to the doctors over the phone in the morning and they'll explain all the bloody results. For now I will rest, which will be easy to do after my food coma. I made us my favorite dinner tonight, pure comfort food...

Shirataki (yam - no carb) noodles
Chicken breast 
Coconut milk (full fat)
Chili powder
Granada curry
Fresh cracked pepper
Purple onion

It's my figgitty fav dinner. Simmer the chicken in the coconut milk with all the spices until the meat is cooked. Remove the chicken breast. Add the broc, gar, and red.o and cook for a few with the noodles. Then dish up, piling on the fresh chopped cilantro to garnish. Piece of chicken if you know what I mean. It's easy, and delicious. Don't skimp on the spices though, that's what I recommend. 

Friday, September 20, 2013

Unnecessary Surgery/Radiation? No Thanks.

Why oh why does my dog eat weird things then poop all over her bed? WHY!?!? Ugh. Good afternoon. That's the news around our household. Gross.

Thanks for being patient with me. This past week I started a new relationship with a superb nutritionist out of Utah. The company is Nutritional Solutions. They work with cancer patients, specializing in brain cancer. All of their recommendations are based on research, not anecdotal stuff. It's pretty cool.

So, yesterday morning I wandered over to Lab Corp and had several vials of blood drawn for eight different panels. I'll get the results in about a week and I can review it with my new nutritionist to see areas where I'm healthy and perhaps some others that I can work on. I'm really excited about it! Although it's a daily struggle to keep up with life, I feel like I'm slowly getting the best doctors and specialists, creating a great team.

Yesterday, after feeling great from my blood draw - all jacked and pumped (a little Pete Carroll for you) that I was getting things done - I received a phone call from my health insurance, of course they would deny me for the Dopa PET scan. I think Dr L is going to submit more clinicals to prove the necessity of the dopa, therefore convincing my health insurance to cover the scan. If they won't cover the scan I feel like I should do it anyway, and here is a story to prove it. I hope this friend of the blog doesn't mind me sharing her story, but I won't name her, so I hope that covers it.

This woman and her husband have had all the same doctors at UW, the same oncologist, Dr Mrugala, and the same radiation oncologist, Dr Jason Rockhill, as I did. Her husband has been battling a brain tumor and had it resected. Several months after the brain surgery, on a followup MRI there was an area of increased T2 signal/flair, and the doctors at UW wanted him to do another resection, and more radiation (or maybe it was just radiation they wanted) because they said it was tumor growth. Long story short, the wife was terrified and asked for a referral to get a second opinion. After a couple more appointments/discussions with various doctors, they ended up at UCLA with Dr Cloughsey (my new neuro oncologist). Dr Cloughsey scheduled a Dopa Pet scan, and it's a good thing he did because the area of T2 signal/flair was just scar tissue. SCAR TISSUE!!! Apparently scar tissue can form months after surgery and/or radiation as your body heals, and it can continue to grow, mimicking tumor growth. (Fingers crossed for that result after my scans next month!) THAT is the problem with MRI scans, they do not show if the area is tumor, or scar tissue, and doctors are over treating, or mistreating, and who knows how often!?!

Man, if that story doesn't teach us something, I don't know what will. It's just shocking. Please, please, go to the best doctors, go to the facilities that have the best technology, the best machines and up-to-date procedures. That story is incredibly profound, and terrifying, and it shows the lack of knowledge and ambiguity of these MRIs. An unnecessary brain surgery? Unnecessary radiation? Holy crap. Holy. Crap.

As a side note of other happenings in our life, I had three moles removed on my chest last week - left breast, sternum, and right areola. I received the pathology results on either this Tuesday or Wednesday, I can't remember which, and they came back, respectively, moderate dysplasia, moderate dysplasia, and severe dysplasia.What is the deal!?!? I have the most resentful, disagreeable chest. I don't know what the deal is, I've never been a topless bather. I don't know why the moles on my chest continue to try and turn into cancer. Sometimes it's really hard to keep up with my health, especially when there are so many different areas of my life that have to be monitored. The dermatologist wants to remove more of the tissue on and under my right areola. What are they going to do? Remove my nipple, dig out the underneath, then sew my nipple back on? Or would they toss out my nipple and sew on a synthetic one? I can't see how they would dig out everything under and around the area and leave my nipple which is immediately, directly, right there. EEEK! Remember a year and a half (or so) ago when they removed a massive portion of my right breast because of a different mole? It had several stitches. How in the world will they do that with the area around my nipple? Sorry if this is too blunt for you, or awkward to read, but I often look at my body as a specimen. It's just body parts.

Second side note, and completely off topic (Phew!)...our wisteria is blooming! Dan and I used to have wisteria in Wenatchee but it never bloomed. This is so exciting! And we can see it from our bedroom window. It's a soothing view. :) It's little things like happy plants that aren't lost on me. In fact, they literally make my day, keeping me smiling, and so very grateful to be here in this life, on this planet, with all of you peeps. I love it that life really is about the little things. It makes everything feel so simple. So doable.

*Writing this post took just under 6 hours. Boy how life has changed. It's much more challenging. But I'm doing it. I'm making it. Little by little. :)

Tuesday, September 17, 2013

Little Break

Hi Friends, I am having a hard time typing, and don't have the energy to keep up with communicating with everyone. I'm just so exhausted. I have been keeping up with the venom but at this point I can't even begin to call everyone back, respond to the emails, texts, and such. Please forgive me, and be patient. My brain just isn't working quickly, and the idea of trying to find the energy to catch up is too overwhelming. Just writing this post has been a cloud over my head because I'm just so dang tired. 

I did have a fabulous weekend with family though. My beautiful, kind uncle was married. It was an honor to be invited to the small ceremony, to hug the family, laugh at the stories, and to be included. It was absolutely lovely. My uncle is such a special man, with a huge heart, and I absolutely adore him. 

Friday, September 13, 2013

Angry Squirrels

My independent, stubborn leg will not stop me from slogging around the lake. Neither will squirrels throwing pine cones. (I swear it almost happened once.) Nor will birds with incredible aim. I once heard that being hit by bird poop was good luck, but I'll bet that the saying is just to make people feel better. Kind of like rain on your wedding day. Either way, it's pretty hilarious! I'm pretty sure the poop was for Emma. I'm just saying....

Thursday, September 12, 2013

Scheduling Dopa Pet

Lately my brain has been foggy, for the past few weeks. I've been fighting it, but it's getting worse. Word finding, exhaustion, sentence completion, loss of control of my right hand and dragging of my right foot. I'm constantly in vertigo, and often I will will just fall asleep out of nowhere. It's scary. Because of this turn of advents, we are trying to get my Dopa Pet amd MRI scans scheduled sooner. I'll need to fly down to LA and I don't know how to do it all, but I'm sure my family can help me. I'm having problems reading, and taking care of things. It's sad. I hope that this isn't the beginning of a downward spiral. I haven't had these kinds of problem since I was first out of the surgeries. What's happening to me? My mind feels like it's melting, and my body feels like my right side is weighted down. I lay in bed every day, no more walks or running. I'm not sick though, feel like that would be better though. I feel crazy. And it's sad that Dan is noticing the deficits too. I've been having a nice long run of life, but I'm not ready to give up. But how will I fight when I can't research? When things don't make sense. I'm so confused. And scared. And very tired. The worst is noticing my mind evaporating. Please excuse my lack of emails/phone calls. I'm just too pooped these days.

Sunday, September 8, 2013

My Super Amazing New Hair!

You know the saying, "Fake it 'til you make it"? Well, I love it. I use it all the time when I don't feel happy, forcing myself to smile as I wander around the house, or I'll make it a point to Google silly kitten videos, or if neither of those work, I try to change something about my appearance to change my attitude. The problem is that I haven't been feeling that great about myself for quite some time. Although you can't see all the short patches of hair on my head (because I am a hair ninja that pins, and tucks like a maniac), they are there, and usually, at home, Dan and I look at the awkwardness all the time. It bothers me so much that I don't like to shower. I hate the feeling of putting my fingers through my hair, feeling the scar, and the knobs around my head where screws hold the metal plate under my skull. Since they basically sliced my skull from front to back, when I suds up my hair, if I rub both sides of my head at the same time the scar pinches, and it's horribly painful. Similarly, when I sleep and lay on my side, it pinches the scar, causing my head to feel like my head is a nesting doll being unscrewed. Back to the shower conundrum, don't worry, I still bathe, but feels like it's a chore, not a point of relaxation.

I often live with my hair in a bun because I don't know how to style my hair around the short patches, or I'll do a "half up" style which I don't love, it's pretty Snookie-ish, but at least my hair isn't in a knot. Anyway, it's a silly thing, but when you don't feel pretty, you're not nice to yourself. You don't feel worthy. When you don't feel great about yourself, you aren't the best partner. Dan has always loved me no matter my hair length, body size, mental capacity, and I am very grateful, but it's important for me to feel good about myself, to feel proud, and to love myself not just for what's on the inside, but to enjoy my shell too. I mean, some people argue that looks don't matter, and I agree that they shouldn't, but I do judge myself. I judge my looks, and I want to feel good about the face looking back in the mirror.

With all of these thoughts hunkered in my brain, I started reminiscing about the most fun era of my life, a time when I was carefree, I felt loved, I felt capable, independent, that the world was mine to explore, that life was truly endless. These past several months have had me so nervous to cut my hair, not sure what could be done to fix the patches, but instead of thinking back to happier times as memories, I decided to take matters into my own hands, to harness my resources and just wing it. So, yesterday, I headed into the city to see my buddy Jesse (he's cut my hair since I was 14ish), and brought with me a photo of my favorite hair from my favorite era for my friend McKenzie who does my color. We conferred together and decided we couldn't do the hair style, but we could absolutely do the color. Success! I haven't wanted to spend the money on getting my hair cut (it has been well over a year - other than Dr L's shaving for the October surgery), but I'm over that. It's just silly. There are things you can cut back on, other areas to save, but getting your hair done doesn't have to be one of them. That's my new stance anyway.

So, now I have fun new color and cut! And it makes me feel happy, and smiley, and sassy, and normal, and just like string theory, it connects me back to my favorite time of 2008-2009, it's almost as if I've been reading a book about my tumor life, not living it.

It's really odd that hair makes such an impact, and I don't know why I keep forgetting that fact. And also, I don't think I'm going to continue to feel guilty about spending money on getting my hair cut. That's just silly business. I wonder if I was just punishing myself, in a way, for having the tumor. I know that I told myself many times that I didn't deserve to get my hair done, that it was ugly, and gross, and not worth the money or the effort. Then, I would put my hair up in a bun and delve into stuff that actually matters, like research, communicating with friends and family, ordering pills, scheduling appointments and travel, etc. Why do we do that? Be mean to ourselves? Nothing good comes from that mean voice in your head. I shut her up the only way I know how, by doing the opposite of what she says. :)

This first photo is from 2008, the year I met myself. It was the year I blossomed. And it was the year I ran into Danny, when he swept me off my feet (literally, there's an actual story behind that). In fact, Dan took this picture...

 Quite a far cry from last October...

And, of course, the new and improved Jess...

I forgot to take a picture of the actual 'do', but it's awesome. It's shorter on the top, and tapered in areas. It's very Joan Jett, except, clearly my hair is curly, and now honey colored. It's very rocker chick meets island girl. I'm pretty excited about it! It's breathing new life into me. Change is good. Unless it's describing tumor growth. (Sorry, can't help it, macabre is my middle name.)

Thursday, September 5, 2013

Everyone Needs a Makeover

Not much more to do on a stormy September day than finish art projects. You can see a before and after of a chair makeover I completed today, down at the bottom of the post. By the time I was finished it was already sunny again, just another beautiful thing about Seattle.

I don't know what's going on, but I feel down, almost depressed even. That's not normal for me. I feel such stress about the Dopa PET and MRI scans in October. I'm scared. What if nothing I've been doing is working? What if they find out that the area in question is tumor. Will I need to start chemo?

I am dreadfully sick of having a tumor. I'm sick of having to work so hard to fight something that is this powerful. I will continue to fight, because it's what I do, it's the only thing I've got, probably the reason why I've survived so far, but my heart isn't in it right now.

I just want to be normal, have normal activities, normal thoughts, not always be afraid, not have to do all this work. Sorry for complaining, I'm just scared. I'm tumor exhausted. It's like a mental jet lag, but without the fun part of traveling.

Here's a photo of a chair that was left at our house from the previous renters...
Here's a photo of the chair after I got my grubby hands on it...

Tuesday, September 3, 2013

Rainy Run

This morning, Emma and I swapped our 11:00 am walk for an 11:00 am jog, and it was glorious. It dumped rain, and all I could think about was how pleased my plants must be, Seattle has been much too dry for my poor little green guys.

I'm still honing my diet, and although it takes a lot analysis (low carb vs paleo vs keto vs restricted or a combo of a few), I think I'm really starting to figure out what's going to best for me, and easiest for me to succeed which, of course, is paramount. If a lifestyle or diet is too difficult to maintain, what's the point?

It was so much fun jogging today, it was the first run around the lake with just Emma and I in several months. What a gift. Running helps me think. Somehow when I walk it just doesn't clear my mind, or trigger those endorphins. Walking feels like a job, a chore, and jogging feels like a gift. I probably sound like an oddball, but heck, we all have to find our joy in life, and for me it's jogging. I don't want to feel like I'm constantly trying to delay my death, trick by trick, even though technically that's what I'm trying to do. I focus so much on treatments, supplements, research, MRIs, trips to doctors, contacting research institutions, emailing hospitals for possible clinical trials, now taking the venom several times a day - inevitably, I just need breaks. I realize that jogging will raise my blood glucose, therefore feeding the brain tumor, but I guess I've come to the conclusion that it's a necessary evil. I figure it's better for my psyche that I run, than to feel disconnected to society, to Mother Nature, and most of all myself. Like I keep saying, I don't just want to be alive, I want to live.
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