RATS! Scar Tissue vs Tumor

Horrible news. Yesterday morning I received a phone call from UCLA. To start at the beginning, the MRI report I've read was from UW, and I've been waiting for UCLA's report. Flash back to yesterday, I received a call from UCLA's oncology department wanting me to come in for an appointment on August 12th. And the woman didn't know why. she had zero information. I was so confused, and panicked. Usually I deal directly with Dr L's office, but this time it was the chemotherapy sector. YIKES. My heart dropped. I asked if it was about my MRI results and the kind woman had no idea. So I asked for someone to call me with more information. Then Dan emailed Dr L, and I called her office. The waiting period was incredibly painful.

A while later, we received a response from Dr L, and a phone call (within moments of each other), explaining everything. Apparently, there is an area on my MRI of hyper intense T2 signal that has slowing been growing. The doctors can't be sure if it is scar tissue or tumor tissue, so they want me to fly down to LA and get a dopa pet scan along with a regular MRI. If it's tumor they want me to start some sort of chemotherapy. 

After talking with both doctors, we all agreed that this is not an urgent matter as I'm not presenting with symptoms. So, Dan and I decided to wait and schedule both scans in October at my regularly designated time for scans. If I have any new symptoms I am supposed to immediately schedule the scans and fly down to LA. 

I'm very saddened, and feel nauseous about the turn of events, however I'm relieved and grateful that UCLA is so thorough and can provide better care than any hospital in my area. There's only a few hospitals in the country that do the dopa pet, and I'm reminded of the fact that it's paramount to go to the best, to travel for doctors, to not stay stuck because it's convenient to use the neighborhood or regional hospital. Your life literally depends on it. Doctors are not equal. Hospitals are not equal. Treatments are not equal. 

Although I felt scared by the news from UCLA, and yet relieved that it isn't definite tumor growth, Dan and I made a last minute decision to join a indoor bocce ball birthday, and I'm so glad we did! There's nothing better to put a smile on our faces than friends, and laughter! It was fantastic! Laura's probably going to kill me for posting this pic, but I'll deal with her sassy wrath later. :) These girls are so fun, and kind, and real. I just feel like life is constantly extraordinary. I don't know why I got so lucky, but I'm going to soak up every minute.

Super Slice

Created a new take on a Waldorf salad tonight, keto style, and although I didn't serve fish, I was still able to do some filleting. Ouch. Thank you Dr. Dan. Don't worry, there is a bandage under there.

 

We are still unpacking which is taking the majority of our time. Next to that we have been fixing random things on my car so that we can put it up for sale. We are all about downsizing, and simplifying. Although I would love to drive again, the soonest would be early September (stupid seizure). I've been keeping little Rosemary, my 2000 explorer because she's paid for, and of course, I love her. However, we really only need one car. And if I do start driving there's an amazing service called Car 2 Go, so I can always find a way to do what I need. If I wouldn't have had the seizure in March, it's possible I may have started trying a few little trips on side streets. I'm apprehensive about driving and that's why I haven't pushed it these past few years, but with the restricted ketogenic diet (started at the end of March - after the seizure), I feel like a whole new person. My body feels better, my mind is clearer, I even have more energy. Granted, I'm still not interested in highway or interstate driving, but slow sweet little old lady driving for an errand or two sounds pretty dang appealing.

I'm still absorbing the MRI results. Sometimes I realize I'm even holding my breath. I quickly inhale, then tip my head back, closing my eyes, and I say a little thank you for this amazing gift. The glorious gift of life that never ceases to amaze me. And it's mine. This is my life! Wow. I am alive and breathing and I love and I receive love. What a beautiful thing. To breathe fresh air, and laugh, and dance, and talk to my bro on the phone, or barely escape peeing my pants from Dan's tickles. To make tea in the morning and think of Dan's mom because she bought me a beautiful turquoise tea kettle, or the multitudes of phone calls to my parents each day just to share a stupid story about a plant, or to check in. (The fact that they still answer my calls is a miracle.) The contagious laughter from quips of my friends, with hilarious YouTube videos, their hugs, their kindness. The support I've received from blog readers - I don't know how you do it, no one has ever said anything mean (and truthfully, if you did, I don't remember...), and I know I write some ridiculous things. I just feel grateful. I know I'm cheesy, but I can't help it. 

Having come from deep fear when we have watched Hermie grow, I must say that I am eternally, exceptionally, unimaginably thrilled and humbled by the ability to enjoy and live this extraordinary life. 

Relief

I woke on Saturday and continued to unpack, and as the minutes, then hours passed I became more and more anxious. It hit me like a ton of bricks that the MRI was a week ago. That's a long time to not have results. In the past, UW had emailed me test results from their secure system, so I decided to log in and email the doctor's office to see if they could send the report. I knew it was a Saturday, so I didn't expect to get any response (other than an automated one) until the work week began, but bam within 10-15 minutes the report was in my account. It really improved my opinion of UW. I have had some bad experiences with the oncology department, but it's nice to have positive experiences with other departments to wash away any negative feelings.

So anyway, after Dan and I read the report, I posted it to the blog so that you can see for yourself. We feel incredibly relieved with the news. I feel like this MRI report is the best one yet. I'd love to see less flair/T2 signal, but for now I'm just thrilled to not have any nodular area/no tumor and no uptake of contrast dye. 

It took several hours for the report to kick in, and I guess it still hasn't. I'm kind of riding a wave of relief, and it feels fantastic. I even dreamt last night that I was sailing. :)

To celebrate the wonderful news, Dan wasn't satisfied for me to just watch girlie movies cuddled in a blanket on the couch, so he stepped up his game and we grabbed some friends. Removing his bias against dancing, we went out and boogied! I am a ridiculous dancer, but a happy one. I'm always game for dancing, but when it's to literally celebrate life, it feels even better. :)

MRI Report (6/20/13)

Examination: MRI BRAIN WO/W CONT Indication: WHO grade 2 astrocytoma in the left parietal region, status post gross total  resection.  Comparison: Most recent MRI from April 20, 2013  Technique: Non-contrast Head: Axial T1, axial T2, axial diffusion.  Post-contrast Head: 3D FLAIR (Sag, Ax, & Cor), axial diffusion. Axial, coronal & sagittal T1. Contrast: Contrast Agent Prohance 15 ml 07/20/2013 INTRAVENOUS Findings: Again identified stable changes related to left-sided craniotomy. The left  parietal lobe resection cavity is unchanged in appearance since the prior  exam. The prior described nonenlarged T2/FLAIR hyperintensities surrounding  the medial and anterior aspect of the inferior part of the resection cavity  (604/38 and 39) unchanged in appearance since the prior exam.  Hypointense signal involving the medulla on T2 appear to be artifacts. Postcontrast imaging demonstrates linear enhancement in the surgical cavity  underlying the craniotomy this is unchanged from the prior exam.  No nodular enhancement in the surgical bed. Small DVA in right frontal lobe. There is no acute infarction. No mass effect no hydrocephalus.  The major intracranial flow voids show expected appearance.  Bilateral paranasal sinuses and mastoid air cells are clear. Bilateral orbits  are normal. Impression: Compared to prior MRI from April 20, 2013, Stable appearance of resection  cavity in the left parietal lobe with nodular T2/FLAIR hyperintensities along  the anterior and medial aspect of the inferior part of the resection cavity.  Continued followup is recommended. No acute intracranial process.

More Cherries

Taking a break from packing, unpacking, and the joys of moving (it's too hot for this...ugh), to share some news about another cherry run. Back by the graciousness (is that a word?) of Kings Market and Market Place in Friday Harbor, my dad and our buddy Ron delivered another batch of cherries, this time organic. So if you haven't gotten your fill of sweet stuff, or know someone who wants to get regular...ahem....please feel free to purchase some delicious cherries to celebrate summer. 

Dan, and my family, and I appreciate the support so much!

Happily Developing

Inconvenient for moving, Dan has the keys to our old home. Conveniently, that forces me to walk Emma down to the lake for a swim. It is officially summer in the NW. It is and has been, hot (by Seattle standards). It's gorgeous! Today came with a swelter first thing in the morning, pure sun. The dawn peaked her head with a beautiful haze of deep blues, graduating to the babies, then, bam, sun. It was so bright in the five o'clock hour that I wanted to get up and get to packing, but I haven't been sleeping very well, so I adorned myself with my eye patches, and Bose noise canceling headphones. It's a good look. Have I mentioned I'm a light sleeper? I had been enjoying the several days of fog rolling in and burning off midday, keeping things cool. It felt fresh, reminding me of gorgeous San Francisco (one of my faves).

I had been meaning to walk over to UW to get my radiology report on Monday, but I'm scared. And it doesn't sound fun. The report is usually available at the records department within 24 hours (according to the MRI tech). It's a pain that I have to go get it myself, but oh well. We also mailed a hard copy of my scan to Dr L on Saturday. I figure I'll hear the news when I hear the news. I'm not interested in doing radiation at this point anyway, and that's the only thing my western doctors have to offer. 

On another note, it's a shame We had to move, if only for the fact that my garden is happily developing. Hope the next tenants love cucumbers...

Happy Socks

MRI Images

No obvious uptake of contrast dye. Nerve wracking morning. The T2 flair appears to have increased, and the definitions have expanded in a couple of directions, but all-in-all we feel like there's no massively obvious area to panic about.

We (Dan and I) are not trained in MRIs and don't know what we're doing, we just like to compare my brain scans so that we can visualize what's happening in there. 

I would not surprised if the report comes back with bad news; we never like seeing more on an MRI, which is our perspective on the images. But I will not worry too much until I read the report, or hear from Dr L. For now, I feel relieved that the tumor appears to still be low grade, and there is no clear nodular area (that us laymen can recognize).

On a side note, my tumor area looks like a happy dog, panting...do you see it....it has hot breath coming out of the mouth.

The image on the L is April's MRI, and the R is today's. On these images they look almost exactly the same, but with the large screens, it does appear that July's scan is much brighter, and the lines may have expanded in areas. Guess we will have to wait and see. In the meantime, it's another moving day, sweet!!!! I'm all about fun distractions. Onward and upward!

New Home

Dan and I have been gloriously distracted by moving to our new home. It's so exciting! We started looking for a rental, and had become quite disheartened. Seattle's rental market is bloody, and vicious; it's been hard vying for a home out of hordes of people. 

Dan and I had been feeling the pressure of finances for quite a bit, and as people have been so generous with donations and by purchasing cherries, we have been anxious to find a tiny, safe, happy home where we can save money for shots and other medical needs. 

So after feeling disheartened, and fearing we wouldn't find a place for several months (and being rejected twice already), on Wednesday, after visiting Dan for lunch, I walked past my favorite home at Greenlake. Serendipitously, the front door was open and the place was empty. Mind you, I have been enamored with this little gem for two years, ever since we moved to Greenlake. I pass by it every time I head out for a walk. Anyway, there was no one around, but I had a good feeling about it so I sat down on the front steps with Emma. And sit we did. For just under two hours. Then the landlord arrived, and fabulously, fate had intervened. He brought doggie treats from his car for sweet Emma, and we hit it off immediately. 

I wanted to sign on the spot, but the gentleman wouldn't let me do it without at least showing it to my husband. I giggled and said, "Oh, you're right. But I just know he'll love it - we've talked about it many times." And you know what, it turns out I was right. We received the keys the very next morning, and have been cleaning, and moving (little by little).

It's less than 600 sq feet, so we are truly sifting through our things for only the necessary. But it's glorious, and the monetary savings are such a massive relief. I can't even express the excitement for our new home. It's funky and quaint, and makes our life so much easier. It is a happy home full of sunlight and surrounded by a thin garden full of gorgeous plants that I can nurture.

I'm serious about this, at each step, each turn, I continue to be amazed and grateful for the gifts in my life. Things constantly continue to get better and better. Even when times are tough (toom-ah), each day I'm blessed with gifts. 

Fingers crossed for a clean MRI tomorrow morning, but if not, there are more things I can attempt, more treatments, more tricks. I'm not going to fib, I'm terrified. This is a huge MRI since one of the three hospitals felt there could be progression. We will find out soon if they were on to something, or perhaps they jumped the gun. I'm going to need constant mental reminders to do my deep breathing. When in doubt, think of other people, and wish amazing things for them. It's always distracting. Some people call it praying...I don't really know what I call it. The only thing I do know is that it feels good to do.

Our new great room...

Dreams Shreams

Good morning! I've been distracting myself before the MRI with friends and walking. Yesterday I walked to Dan's work for lunch, finding a cool new path...

Of course, even with my best efforts at distraction, I had a nightmare last night that I had a 2 cm tumor. I'm not a dream whisperer, but maybe it's one of those reverse reality things where the opposite is true? That's what I'm going to decide to believe. 

I have been having such an amazing summer, and as corny as it sounds, I'm happy each day, waking up excited about my life, my friends and family, my little garden, our sweet Emma and baby Bingie. 

I haven't been researching as much, instead taking time to live my life, and enjoy myself. If the scan is bad, I'm sure I'll nose back into the research, but I have to say that these past few weeks have been such a treat!! 

I just feel so fortunate, so blessed, and incredibly grateful for my life. I don't know how I got so lucky! 

Thank you!!!

I keep getting more and more texts and emails about the cherries, how delicious they are, and it makes me giddy. Dan and I feel so loved! I should have asked, if people felt like it, to shoot over a photo of them with their cherries. The anecdotes have been hilarious, and kind, and just everything that life, and friendships are all about. I can't believe how lucky we are. Life is just wonderful. I know I sound ridiculous, annoying even. Maybe even insincere? But from where I'm sitting, I have nothing but gratitude in my heart. I know it won't always be that way, how could it? Or could it. I don't know. I'm not sure what life's about. Where life will take us, how bad it could get, I have no answers. The only thing I have is each moment, each friend, each laugh and kiss with Dan, each hug with family, and it completely makes my life full of joy. Disclaimer: I do get cranky, and such, but with such an amazing life there isn't much to complain about. I just feel so loved. Thanks guys.

The Good Life

There's nothing better than a Greenlake picnic. Dan is so great about seizing the moment. It was just the two of us, but with the blanket and picnic utensils, given to us from the Malones and Farraghers, it was as if we had a bunch of friends surrounding us :) 

Life is good...

Stabilizing Blood Glucose

I was worried, while I was out of town that my little garden might have died from the heat but alas, instead, my flowers were blooming!

I'm starting to feel more rested. I had a fabulous 11 hour sleep last night. It was glor-eee-ous. Since I'm back and I have less than 10 days before my MRI I wanted to hit my restricted ketogenic diet hard, but my blood glucose numbers were wild. I don't know if being on the restricted ketogenic diet causes your body to become more sensitive to insulin or perhaps desensitizes you, but it has been insane. Before I headed out to Friday Harbor last week I had an episode where my blood glucose fell so low that I felt like I was having a seizure. We believe it was not a seizure though, just a severe hypoglycemic attack. It was very scary. Because of that episode, we decided that while on vacation I was not going to be fasting or restricting calories, or being nuts about food choices. As you know from the previous post, my body was all messed up from traveling and excessive excitement, so it's probably a good thing that I wasn't being crazy about my food too.

Yesterday, back on my regular plan, I was freezing and very dizzy. I wasn't even doing anything, I was sitting down. I quickly decided to check my blood glucose and it was 45. That is dangerously low. I was having problems thinking, it was confusing me to even work my blood glucose monitor - I couldn't figure out which end of pricker thing to draw blood. I immediately ate 2 ounces of nuts (that's quite a bit), and it caused a temporary rise of 13 points, then within moments I was back down to 51. I couldn't stabilize my numbers for the life of me. Worried I was going to endure a hypoglycemic seizure, I ate half of a banana (definitely not ketogenic). I don't know what's going on in my body, but this tumor killing blood glucose range of 55-65 for Seyfried is very, very tricky. And if you're not careful, it can be dangerous.

I know I can figure this out, and I know it will continue to get easier so I'm not worried, but I figured I'd share my experience in case anyone else out there trying to do Seyfried's plan had encountered similar problems. It's very tricky playing with low blood glucose when you already have a seizure problem. Almost like playing with fire. But if we didn't play with fire we wouldn't have much of our food. Know what I mean? And I know that it's important to keep my blood glucose very low in order to keep circulating glucose low so that I minimally feed the tumor. I say minimally because it's impossible to completely limit glucose. Our body creates glucose from excess glutamine (protein), and also I've read that our bodies can convert one of the triglycerides from fat (not much, but still important to know - that's why you can't eat unrestricted fat) into glucose. Anyway, I'm getting too detailed, which can get boring. It's all stuff that you'll read about if you choose to get into this lifestyle. In fact, here is the most comprehensive website that I've ever found about the KD. It is inspiring, encouraging, informative, and I enjoy rereading it often just to boost my excitement about the program. This diet is fabulous for anyone, it benefits cancer patients, those with Alzheimer's disease, diabetics, those with seizures, and so much more. The information is fascinating, whether or not you want to follow it. Enjoy! http://www.ketogenic-diet-resource.com/

It's too bad this restricted ketogenic diet is so clearly proven and undeniable. Carbs are delicious :) I can't help but notice the similarities between carbs and cancers, and the brain, with seizures, Alzheimer's, mental health, migraines, and of course diabetes, and so much more. We are killing ourselves with carbs and sugar. The carbs and sugar aren't just making us fat, it's literally causing diseases, and cancer, and brain metabolism issues. Looking at it now, it has become obvious to me. There's actually a new prescription "food" named Axona which helps people with Alzheimer's disease. It boosts the body's ability to create ketones so that the brain has more food. The Axona website says that the side effects from Alzheimer's are due to the brain's inability to metabolize glucose. So, if you're on a standard diet which is all about glucose and no ketones, the effects of Alzheimer's are going to worsen. However, if you switch to a ketogenic diet it will lessen (theoretically - I am not a doctor) the side effects, strengthen the brain, and possibly even heal the brain a little. There is a lot of research out there, and most doctors don't know anything about diet. (Blah, blah, blah, "heart healthy diet" - no bueno, that's actually the opposite of what you should be eating.) I'm not trying to be rude, it's just a slow process to integrate new research into hospitals. Practicing doctors are very busy and usually aren't researching up-and-coming stuff. Anyhoo, just wanted to throw that out there in case you hadn't heard that the ketogenic diet can help a lot of conditions (not just brain cancer). I hope this info helps at least one person. :) I can't say enough how I wish diet didn't matter, that we could eat whatever we wanted and there would be no repercussions, but it just isn't so. The good news is that we can help heal ourselves (to a certain extent), and that is empowering.

As a side note, people with Alzheimer's don't have to get the prescription Axona powder, they can just get on the ketogenic diet. There's no trick, it's just the pharmaceutical company found a way to make money off the 4.1 ratio of fat:carb+protein. Just wanted to throw that out there. It certainly does provide another tool in the belt though!

2nd Annual Cherry Fundraiser

Oh my goodness, I am exhausted. Best week everrrr. Of course, I have a habit of saying things are the best ever, or that's the nicest person in the world. Or, I'll meet someone once, then in the future I'll refer to them as my friend. Lots of friends laugh at that, but maybe it's an island thing? We're like family, and that is just how I was raised. I'm still working on not making friends with everyone I meet on the metro bus (it scares the bejesus out of Dan and my parents).

So, on to some very exciting news...it is time for our annual cherry fundraiser. This year our clan has been so exhausted with all of the NYC, NC, and other travel/research/life that we just don't have the energy to tackle the Seattle and Roche Harbor cherry booth sales, or the individual sales. Luckily for us, Kings Market and Market Place in Friday Harbor were interested in purchasing cherries from us. So yesterday, my father stopped by Stemilt Growers in Wenatchee and they loaded up boxes and boxes of freshly picked cherries. My dad continued on over to Anacortes to catch the ferry to FH, he unloaded cherries with help from KM & MP, hugged my buddy Libbey, then Dad caught the next boat off the island and drove all the way home to Wenatchee. Talk about an amazing father!!! I am so thankful to Libbey Oswald and John McBride for buying cherries, it is such a treat for us to be able to sell a large load of cherries.

So, starting today there are cherries at Market Place and Kings Market. Please, if you stop by either store and buy some cherries, think of me and know how grateful I am for the help - just smile and know that I'm smiling and wishing I could hug you. The island is integral to who I am. It's my Disneyland, my heaven on earth, my sanctuary and where I find solace. Thank you for loving me, raising me, growing with me, sharing memories, for teaching me, for all of the amazing friends and of course for giving me my wonderful husband (thank you Linda!). Thank you Friday Harbor, I love you.

I'm still very exhausted from my amazing trip to Friday Harbor, so please forgive my lack of email responses and such. By Saturday morning I was so exhausted that I slept most of the day, and evening. It was such a bummer too, I missed out of sailing and kayaking. It's tricky though, as I get tired my right hand, arm and leg stop working, they become dead weight. 

I've gotten pretty great about hiding it (if I do say so myself), but it always scares me. The only thing to do at times like that is to lay down, even if I don't sleep. And, as you can imagine, my tumor problems are not conducive for kayaking :) I bowed out of the activity, not needing to explain which was nice. I don't like to dwell on the issues, not wanting to make it a bigger deal. I'm just excited to get invited, and I'll bet if I really wanted to go the girls would have found a way to figure out a Houdini solution. It's tricky because I don't want to have friends not invite me because I have cancer and am unable to participate at times. My true friends have not batted an eye about my limitations, always wanting me around, knowing there's always a way to work it out, and it feels really good. Yes, I have cancer, yes, I'm also human and want to do everything everyone else does. I don't even mind bowing out, I just adore my friends for including me, then also understanding when I'm too tired. They make me feel very loved.

By Sunday morning my right eyelid had joined my rogue right hand, arm, and leg. It almost looked like my eye was melting. Thankfully it is sunglasses season! And if I need to take the sunglasses off I just cock my face, or left eyebrow. There's always a way to trick people. I'm becoming a master of disguise :) or of disguising my ailments anyway. The eyelid is slowly getting better, and I'm sure once I'm rested I'll be back to new in no time! My next MRI is on the 20th of this month so we will see what's going on in my brain soon enough. For now, I'll rest.

Here's a few random photos of the trip...

I wish I would have taken more pictures. At the time, I'm always having so much fun that I don't think about it, but I've got to just make it a priority. Looking at them always makes me smile :)

Friday Harbor 4th

For those of you around here, you're well aware of the 80-90 degree heat we've been enjoying. It makes for spotty sleep (Seattle builders aren't keen on AC), but my bones are in heaven. Although the inside of our place is an oven (poor airflow at night), oddly, it has caused me to become crafty and curious - it's too hot to sit. Not caring that I have little to no experience I hemmed address, fixed a hole in another dress, and added straps to a third. I also have my sprout condo in full effect (I can grow three large layers of the guys at once - it's a true farm). Finally, this morning I tried my hand at sun cooking tea bags - or whatever it's called. Iced green tea is my favorite beverage treat (other than wine of course). Sunning the tea is fun to watch, not like watching painy dry. (I mean, come on, it's in the sun - what's not to like?)

This week has already been fabulous, for many reasons; the sunshine, my health, my ketone/glucose (I hit 6.9 ketones one day!) - jeez, what's not to like! Soon, we will be headed up to Friday Harbor for the 4th of July. To head home to my favorite place in the world, to laugh and boat and walk and BBQ, hang with family and friends, I truly can not ask for a better gift.

When I head north toward Anacortes, as soon as we set the car to cruise control we get goofy, we car dance, and our stress melts away. And each time we go, we run into old friends, hordes and hordes of them, and we share hugs, and stories, and my soul fills with gratitude and giddiness. I am so grateful to be an island girl! 

This week is just going to be fabulous, full of love, laughter, and of course some serious shenanigans. Being amongst some of our closest friends and family will rejuvenate our souls in a way we have needed in a big way. San Juan Island is my safe place, my cocoon. 

I just can't wait!!

Blasting Ketones

Best day EVER (on Seyfried's plan). Because I got my Newcastle Disease Virus shot on Wednesday, and flew home that evening, I decided to start a basic fast to use the weakness of my tumor cells against them.

When you implement a caloric restriction it weakens cancer cells, because they don't get enough food. It makes them tired and cranky, and weak, and it makes it hard for them to repair themselves. So my plan was to stay within the ketogenic principals, and drink lots of water, and eat as little possible for the days after the shot to potentiate the effects of the NDV. So yesterday I ate 270 calories, and today I only ate 282. I'm not strong enough to endure a water-only fast, so this is the next best thing for me. 

In the past few weeks I have been hovering in the 80-90 range for my fasting glucose (boooo). I've been so stressed about the pathology and all things tumor related that I have been seeing a massive physiological response. Since starting my fast I have remained between 55-65 and today I had my highest ketone reading of 5.1. YESSSSS!! 

Staying in Seyried's range is incredibly hard for me. I wish I was better at it, and I continue to try, but I am a food eater, and it's hard to eat a big meal and keep your blood glucose down. Tiny meals seem to be best, but coming as a burrito eating contest winner, it is hard for me to always be hungry. 

Anyway, I'm excited to think that I'm helping kill the tumor with my diet. 5.1 is thrilling! I can't wait to see what I get tomorrow.

Jiggity Jig

Today has been fabulous. Stephanie and I shared lunch at a quaint little farm-to-table spot (delicious!), then she joined me for Dr C's appointment. The trip has been calm, seamless, and I feel really pleased, excited even. It's nice to feel capable, to shrug off my fears (of traveling anyway). 

Here is the absolutely adorable, 13 days before her due date, Stephanie. (We missed you John!)

Seriously. She's just the cutest!

I'm at JFK now, and although my flight is delayed, I will be home soon. 

Bird's View

Good old "airplane mode" allowed this fun pic of Central Park and Times Square. I made it! Hey-oooo. I might have eaten almost all of my snacks, but I feel great. I'm still taxiing in the plane (yep, I'm one of those annoying people), but will be in the car shortly, then in my bed right after that. This is aw-e-some.

Solo NYC Trip

Tomorrow I fly out for New York for my newcastle disease virus shot. And this time, I'm going on my own!! Woop woop!! I'm so excited, and nervous. This is going to be the first time that I've flown by myself since I was diagnosed (as far as I can remember).

It is very important for me to continue to evolve and handle more and more things. I have lived in such fear, for so long, of seizures. I'll wear my medical bracelet, and I'll take all of the necessary precautions, so I know I'll be fine. I can't wait to take back some of my independence! I have appreciated all of the help from friends with my travels, you have all been very, very supportive. But I am gaining strength each day, gaining confidence, and it is very liberating. Although I'm still a worry-wart, I'm getting better and better about slowing down, destressing, taking deep breaths, and my favorite - cracking jokes. I freak out here and there, but I can also laugh myself back into happiness :)

I feel that I have to take educated risks (a solo NYC trip) in order to believe in myself. Never give up. Never live stagnantly. It has been baby steps to get me to this point, and it's thrilling. So I'll fly out tomorrow, and on Wednesday Steph will join me at the hotel for lunch and we'll walk over to Dr C's office. She'll join me at the appointment, then we'll hug and I'll be off to the airport. This is going to be an adventure. I feel excited like the night before I left home for college. This is the most independent I have been in years, and I am really digging it. Fingers crossed all goes well :) And, if I have a seizure it won't be the end of the world. People have them all the time and they're fine. I'll bet I don't have one, but if I do oh well. I can do this.

Bad Path (No Pun Intended)

Well shit.

I don't normally swear on the blog, but yesterday evening I received a packet from Lindsey, my strategist with Take The Fight, with all of my UCLA medical records. After three attempts, we finally have the records that were originally requested two months ago. Getting medical records can be such a freaking headache. (Thank God for Lindsey!)

So yesterday evening, Danny and I dove into the records and read every single page. It was terrifying. It's never good to read, "Comment: The degree of cellularity and Ki67 labeling are worrisome." Or the other comment that the tumor is "highly vascular" which means there's a lot of blood flow to the tumor which is how it gets food to grow.

This morning I have been trying to redact my medical number from the pathology report and cytogenics report so that I can post them online, but I'm having trouble. After rereading both reports I decided to pull up my original reports from my first tumor resection to compare my Ki-67 and p53 percentages and both numbers have increased greatly. This sucks. This means that the tumor cells are proliferating much faster, and the tumor is much denser (as I understand it). Just when I'm feeling better from the surgery, and starting to gain confidence, I'm hit with a massive blow. I feel sick about it. I couldn't sleep until 2:00 am this morning, and my blood glucose is up into the 80's.

It might seem crazy to some that I'm reviewing over this stuff, and I do have to say that I wish I didn't know the facts, that I wish I was still ignorant, but it is so important for me to look at the exact DNA and abnormalities of my tumor so that I can target my treatments. It is terrifying to see that my tumor is becoming hungrier and thicker and a faster eater. "Slow down!", I want to say. "Chew your food 27 times before swallowing!"

I'm terrified and sad. That's just how life is, though. Ups and downs. Just when things are looking up (or you think they are), you get surprised and you have to change direction, work harder, or try to find a new solution to a problem.

Looking at the entire path & cyto reports make me really see the problems in my DNA, and its' inability to repair itself. This shiz is serious.

On a happier note, my house is swirling with the scent of peonies. Aunt Anne brought them from her garden. I have to say that the flowers are exactly what I need right now. Instead of crying, my throat will get tight, then I'll stick my nose in the peonies and take a big sniff. Thank God I don't have allergies.

Check out the Emma photo bomb :)

Ever since the second surgery I have felt like I wasn't going to beat this. I go in and out of trying to believe, of trying to de-stress, problem solve, and survive, but I can't seem to shake the uncanny feeling that this will be the death of me. Maybe I just need more treatments in my protocol, maybe I just don't know enough to be confident or that I just haven't researched how to fix some of my tumor's problems, but it all feels like such a long shot at this point. Not that I'm giving up - so far I just don't have it in me to give up - but I hate being so shaken, so unsure. It's not good for my soul.

Deserving?

It was recommended by a friend to remove the pages from Cancer as a Metabolic Disease off of the blog. Instead of posting the pages, please email me if you would like me to email them to you. I'm happy to share, but I do have to be careful so that I don't get in trouble or fined. Good old copyrights. I understand the concept of business, however, I feel strongly that grossly profiteering off of cancer is very ugly. Of course, that's just the world we live in, though. Not that my goofy little blog would fall onto the radar of the copyright police - but of course, I never thought I would get a brain tumor either. Now, it's not that Prof Seyfried is taking advantage of cancer patients, I just wish that people didn't have to pay $120 for a book to help save their life (blame it on the publishing company?). The information in that book is not out there in the world - you truly need the book in order to understand and follow the protocol. Of course, you don't need the entire text, most of it is discussing cancer metabolism and various research that is much more in depth than any cancer patient ever would need. But there are a few incredibly valuable chapters that all cancer patients deserve to have access to. Deserve is a very strong word, I realize, and really, does anyone "deserve" to have anything? Clearly you know my bias, and that's enough of that. So, leave your email address in the comments area and let me know if you'd like the information. As an aside, I do feel it's important to point out how grateful I am for prof Seyfried's work (as you know from other posts where I have raved about him), but I feel it's reasonable to admire and respect a person, but still be frustrated about a system (publishing monopolies & exorbitant pricing).

As for me, I'm off for a walk around the lake with my Aunt Anne. It's been almost two years! That's about the same time it had been since I had seen my cousins (different side of the family). This past and current week have been all about reuniting with family, and it is amazing!! A few weeks ago I told Danny that I'm feeling so much better that I've decided to say, "yes" to more opportunities with friends (and family). I want to live my life, not in fear, but in the true spirit of adventure and love. I want to love and laugh and explore (hence all the camping). It's working out gloriously! I feel like life just keeps getting better and better. PS Courtney, Kaal, Isla & TW, you're next! We're coming for you. Auntie Jess & Uncle Dan will be there in a couple of weeks...let the shenanigans begin!

Help With The RKD

Good morning! I have been bouncing around the state this past week. I stayed with my parents for several days, and hung out with a couple of my Wenatchee girl friends. Then Dan and I went camping. I even got the chance to see my handsome cousins.  Somewhere between the sunshine, the laughter, and the fresh air, I realized that I'm in a really great mental place. I have finally gotten into a nice routine with the RKD, and I'm happy in my social life. I feel healthy and strong, and most of all, relaxed.

So, about that comment (thank you for posting that!) regarding the Restricted Ketogenic Diet. You are correct that 500-600 calories is the restricted calories for humans when compared to mice in RKD research. Also, the 500-600 calories are great to get into the therapeutic ranges of ketones and glucose for those who can not manage the water only fast for 48-72 hours. As for the caloric restrictions after reaching the therapuetic ranges, according to professor Thomas Seyfried's book, Cancer as a Metabolic Disease, usually a 20% decrease of caloric intake will suffice to stop tumor growth. (I mean - come on - who can live on 600 calories for life? Not this girl.) To keep in the therapeutic ranges you have to check your blood glucose levels (Ideally 55-65), and blood ketone levels (Ideally 4-7). By watching those levels you will learn what you can eat or not eat, and how much - or how often. It has even helped me adjust my supplements (no more melatonin for me - it causes a massive spike in my morning fasting blood glucose level).

I hope I don't get in trouble for posting these scanned pages from my book, but I feel it necessary. professor Seyfriend's book is priced over $100. I feel strongly that cancer patients should get a discount. I mean, come on, the book is a textbook for students. Anyone with cancer that is researching and trying to save their life, or the life of a loved one, shouldn't have to pay the full retail price, you know there's a wholesale price. Textbooks are such a racket anyway. Just my opinion.

The first page is about the 500-600 calorie issue. Please forgive my unprofessional scanning job, and less than easy to read posting of the images.You might want to use the zoom and print the pages out in order to read them. In fact, please print them because I may get asked to take them down. You might need to select a section directly off of the blog post - not from clicking the images - and print the selection, and in the properties before you hit okay, mess with the zoom. Each computer is different. I still think you should pay the money to buy the book. We can't wait for discounts, or freebees. We just don't have time.

(PAGES HAVE BEEN REMOVED. PLEASE COMMENT BELOW WITH YOUR EMAIL ADDRESS AND I WILL SEND THE INFORMATION TO YOU.)

Perhaps a bit egotistically, I feel a little like Robin Hood sharing those pages. I feel pretty passionate about the RKD and I want the information accessible to everyone. So enjoy!

Metamorphosis

The other day, I walked outside to see my caterpillar and look at this, he's turning into a cocoon. How cool is that!! Seems like an odd spot, a door jam, to pick, but I love it! At least I don't have to worry about stepping on him anymore :)

Of all the places he could have nested, he picked our front door. Pretty cool.

Dad

I am so fortunate to have my dad (and mom) as one of my best friends. Today, is his 67th birthday, and I am really lucky to get to spend time with him (and my beautiful mother). I always forget to take pictures with my parents because we get to talking, and laughing, and doing. But here we are, dad and I for his birthday...

Isn't he adorable?!? The cutest. He's my buddy.

Good Luck and New Birth

Sorry it's been so long since I've posted, I've been - even more than usual - very busy with life, research, family, and endeavors. Between the madness, since Wednesday, I've noticed a new neighbor...

Of course, because I'm the weird nature lover who likes to over analyze animal/insect messages, I had to Google the meaning of the caterpillar. The little guy is still hovering around our front door days later, no longer on the doormat (dangerous!), instead he has migrated to the door trim. I think I'm going to miss him when he moves out, I've really become accustomed to seeing the little guy.

Borrowed from the internet...

Caterpillars are associated with good luck and new birth. In the second stage of metamorphosis the caterpillar feeds to gain strength and build a foundation before the cocooning stage begins. This stage is when we give birth to new ideas and new creativity which hones the foundation to allow a new expression of life. The caterpillar represents new birth and new foundation and is a symbol of good luck in the early phase of new actions.

Caterpillars usually signify a need for gentle and quiet approaches to our activities and endeavors. They can also signal a surprise or gift about to be offered to us, or that can be beneficial to our future if we take advantage of it. Caterpillars herald a time of good news, new birth, and creative inspiration, signaling a time to get ready to start a new project or initiate a new endeavors.

The appearance of the caterpillar reminds us to be cautious in starting our new endeavors. We should protect and disguise them as much as possible as we pursue them. If we do so, we will see rapid growth and we will experience the birth of a new foundation.

Caterpillars can also indicate obstacles within our path. They may even indicate that a person or persons are blocking our growth or serve as a reminder that we must look at things and people around us realistically at this time. Failure to do so will slow down our progress.

And caterpillar also reminds us that new growth cannot occur unless the old is shed as the caterpillar grows quickly and must replace its skills with some caterpillars shedding their skins every few days to make room for a bigger body. A caterpillar showing up may indicate that we are refusing to shed the old that we have outgrown. (Andrews, 1999)

Ketogenic Basics & Recipe

Best breakfast ever, if you're on the restricted ketogenic diet...

Ingredients

1 egg

1/4 c kale

1 Tbsp butter 

0.2 oz goat Brie cheese

1 small clove of garlic 

Pinch turmeric

Pinch cayanne 

Fresh ground pepper

Turn on the oven to 325. Take a ramekin and add the butter. Put it in the oven to melt. While the butter is melting, shred the kale and measure. Slice the garlic and set aside (as a topping). Pull out the ramekin. Add the shredded kale and crack the egg on top. Spice with turmeric & cayanne & cracked pepper. Add the goat cheese and place the ramekin back into the oven for about 10 minutes (less if you want it runny, more if you like it hard). Once out of the oven sprinkle with slices garlic.

Nutrition Info (200 calories)

18g Fat

8g Protein

3g Carbohydrate 

Ratio: 6 : 2.6 : 1

As you'll note, I'm not eating a perfect keto ratio (4 : 1 : 1) at every meal. I don't really care though, it's still keeping my glucose and ketone levels in the Seyfried zones so I feel good about it. Life is too short, and too stressful to be all measure-y and what not. It was delicious, and easy. I mean, whatever it takes to stay in ketosis, right?

I started reading up on why not to eat a restricted ketogenic diet last night and I couldn't find jack, or jimmy for that matter. I did it because I started to doubt the theory. Instead of finding anything negative, it reestablished my drive to continue. There definitely needs to be a caloric restriction though. If you don't limit your protein the tumor will still grow. Excess protein converts into glucose. It's important to only eat about 1g protein to each kilo of your body weight (for the RKD). To find out your body weight in kilos take your body weight (135 lbs), and divide it by 2.2 (135/2.2=61.36). So, I should only eat about 61 grams of protein a day. Nice and simple. As for carbs, I should stay below 20 grams (20g is a general rule for all). I am able to eat the rest of my calories from fat. I track everything that I eat with MyFitnessPal (an app for the phone and better yet on the desktop - on the desktop you can change the perameters of your fat/protein/carbs). My restricted calorie amount is 1290 (a 75% decrease from my daily metabolic rate).

Anyway, not that anyone really cares, but I just wanted to talk that out in case other brain tumor fighters were curious. 

Hope you're all having a fabulous day. I'm off to plant my cucumbers.

Buphenyl (Sodium Phenylbutyrate)

I'm embarrassed. Remember back a few months ago when I was ranting about that very expensive drug that treats gliomas? (As an aside, it's the same drug that Dr Burzynski uses to create his antineoplastons.) Well, apparently, I'm one of the lucky ones that can get it. I kind of assumed I couldn't because my doctor said it was a long shot. So, like a defeatist, I didn't bother to even check with my insurance. Yesterday, as I was reviewing my lists of recommended supplements and recommended medications, I decided to bite the bullet and not be afraid of hearing, "No".

After several phone calls, lots of hanging out on hold, it looks like Buphenyl (sodium phenylbutyrate) is mostly covered. If you recall, that is the prescription medication that is for people with urea cycle disorders (UCD); it is also used for off label use to fight various cancers.

After a little bit of web surfing I read that Aetna health insurance (not my health insurance - I'll be getting it though Blue Cross Blue Shield) goes as far as covering Buphenyl for UCD and also acute promyelocytic leukemia and malignant gliomas. Wow! The problem? As I try to find more proof that Buphenyl is effective to treat malignant gliomas, I can't seem to find it. There has been one complete response that I've found, but that's just one person. Shoot - that result could be as simple as tumor genetics.

I feel dumb because I wanted this drug, and now I wonder if it's actually worth the side effects and effort. I'm posting the study here for my other brain tumor fighters so that you guys have the info if you're interested...



There's more out on the web, but not much. Please feel free to email me (jessoldwyn@hotmail.com) or post links in the comments section with any information you find - or opinions. I'm not a fast responder to emails, but I read all of them and appreciate the help.

Winston Salem in Pictures

Downtown Winston Salem

My new favorite bug. They're red!

Checking out the gorgeous Wake Forest campus

My favorite flower among the gardens near campus. 

Cutest farmers market in aaaall the land.

It's green. It's lush. It's absolutely perfect.

In the heart of the Arts District. My favorite area!

Setting up for live music and an art walk. This town is so cute!

A proper send off near the rental car return.

I buckled into our flight to Charolette and noticed a lucky quarter next to my foot. Sweet!

The view while I contemplated all of my good fortune over the course of our trip, really absorbing the implications of this new endeavor.  

Arriving into true humidity. It's called rain. But clearly, Mother Nature welcomed us back with a smile. 

Fixing The Chinks

Wake Forrest was such a unique trip. We would never have happened upon the destination, but while we flew over the Rockies, I thought about how different my life would be if I wasn't able to explore the opportunities that pop up in my life. The majority of my success, the ability to jump at cancer fighting treatments, or subsequent programs, lay within the hands of those whom I have loved so dearly, who have supported us emotionally - but above that, financially. I am blessed beyond measure. Dan and I have dedicated our lives to creating our own mini think tank, to include the best doctors for my care. We will fight this scary adversary with support from all angles, and now we're able to include Lindsey, my strategist who will help me understand the medical world, the research, the opportunities for treatments, and I also have the Take The Fight (TTF) resources of Andy, Dineth, Lawson, and so many others who are working toward their undergraduate degrees while literally changing the world of cancer care. It is thrilling!

As a basic recap, Danny and I flew to Winston Salem, North Carolina to meet with a group of students at Wake Forest University (overseen by David Warren who was out of town helping his father fight his glioblastoma). It was for a new program called Take The Fight which will subsequently spread across the country to other universities, and further expand around the globe. It pairs students, one-on-one with cancer fighters. The student uploads all of your medical records onto an online database which is easy to access and modify for those on the TTF team and yourself. You also receive a briefcase of hard copies of everything (even all of your MRIs). Both of these systems (the briefcase and online database) make it easy to continuously research and update your plan, whether it's nutritional choices, supplements, clinical trials, research of the disease or upcoming FDA approved treaments, or whatever you personally need to fight your best fight. Your strategist can also join you in appointments with your doctor which is amazing. While we were at Wake Forest Baptist Hospital meeting with Dr Glenn Lesser a neuro-oncologist, we had two take the fight strategists observing and taking notes. Later, the information from the appointment was uploaded onto my medical drive so that I could access it, and they researched a clinical trial that was mentioned and are following up on some upcoming research that was mentioned. It was amazing! Since I will be doing this program long-distance, my situation will be unique. I have plans to ask all doctors as an appointment begins if I can record the session (which I have secretly done in the past...oops...that might be illegal). Also, another option, if my strategist is available, perhaps I can have my computer ready with Skype so that she can be "present" at the appointment. There are lots of options, and I feel, already, that I am being supported, that I'm moving in the right direction. I feel more organized, and hopeful.

I will continue to research and adjust my strategy. I will work hard and utilize this opportunity, and I feel really fortunate to have a teammate, my new buddy, my partner in crime Lindsey to bounce things off of, and learn from her fabulous mind. I am so lucky to have my brilliant new friend to help me navigate the medical world more thoroughly. She is a stunning 4'11 package of sweetness and force with a gorgeous laugh and absolutely fabulous demeanor. She has her eyes on becoming a surgeon (she comes from a long line of various doctors), and just from spending time with her I can tell she would be just the type of person I would want working on my body. She is thoughtful, kind, precise - clearly brilliant. She is just the cutest little thing, with such an amazing mind, and drive. I feel lucky to know her, even outside the whole TTF thing, and I can't wait to be following up and cheering her on along the way!

Thank you for all of the financial support, to our home town of Friday Harbor, our late home of Wenatchee, our current home of Seattle, my old home in Fort Wort, both Dan's mother's and my parent's home of West Seattle, the readers of the blog, our friends in Canada, my family in Poland, our buddies in the Middle East, and everyone else whom I embarrassingly forgot. I just feel insanely fortunate. I'm not exaggerating, I think about how grateful I am every single day. Thank you for the donations. I am a lucky woman, to be supported by so many. Dan has said so many times that he doesn't care if we spend everything (easy to do), mortgage everything (we have nothing of value - we rent a place and use a beater vehicle), he does not care, we will exhaust every option, every avenue until we find a way for me to be healthy. The guy is amazing. I'm sure you guys get sick of me going on and on about him, but he really is the most astounding support as far as a husband goes.

Life is about chances, it's about circumstance. Then, after that, it's about what you make of it. I am enjoying life every single day. Sure, I get cranky. Then, I look at Dan, or call a friend (if Dan's not home) and find a way to laugh and get over myself. Life is just glorious. I probably sound crazy, because I know life can be dismal at times too, but Dan and I have dealt with lost jobs, having to sell vehicles, no money, plummeting credit (really gets me in the heart), debt, missing out on creating a family, and so much more just because of cancer. Cancer sucks! But I have Dan. And my family. And I have friends. And the support of my blog readers. And now Take The Fight, and Lindsey. I am energized with this new program. The way that it's organized helps to show the areas that I'm lacking (ex: concise supplement schedule). I've already uploaded a few new notes/research from my little kitchen office that I can share with Lindsey. It's exciting to have this running dialog with a buddy who is medically minded. I mean, literally, it's in her blood! With Take The Fight I'm able to fix the chinks in my armor, so that I can fight as a real warrior. This is truly changing my life.

My Life is Changing

...and soon, you'll see, the medical world is evolving.

No one fights alone

The bravest patients

The brightest students

Not for profit, for survivors

We play to win

More organized.

More informed.

More engaged.

A new way of fighting emerges

Fight Smarter.

The world's most hands-on cancer non-profit

It's not a charity. It's an army.

Good Morning from NC