7.20.2013
MRI Images
7.19.2013
New Home
7.18.2013
Dreams Shreams
7.12.2013
Thank you!!!
7.11.2013
The Good Life
7.10.2013
Stabilizing Blood Glucose
7.09.2013
2nd Annual Cherry Fundraiser
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.
7.03.2013
Friday Harbor 4th
6.28.2013
Blasting Ketones
6.26.2013
Jiggity Jig
6.25.2013
Bird's View
6.24.2013
Solo NYC Trip
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.
6.20.2013
Bad Path (No Pun Intended)
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.
6.19.2013
Deserving?
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!
6.18.2013
Help With The RKD
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.)
6.11.2013
Metamorphosis
6.10.2013
Dad
6.08.2013
Good Luck and New Birth
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)
6.04.2013
Ketogenic Basics & Recipe
5.30.2013
Buphenyl (Sodium Phenylbutyrate)
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.
5.28.2013
Winston Salem in Pictures
Fixing The Chinks
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.
5.26.2013
My Life is Changing
5.25.2013
5.23.2013
Winston-Salem
5.22.2013
We Made It!
Always an Adventure
5.20.2013
BG Therapeutic Range
Little RKD Engine
It feels wonderful to be succeeding on this restricted ketogenic diet. And, although I don't run any longer, I have thoroughly enjoyed my new hobby of walking. Can walking be a hobby or is it an activity? Well, whatever you call it, I like it. Just yesterday, for the first time, Dan and I walked the Lake Union loop. It was a spectacular day to enjoy the six miles. I kind of tricked poor Danny though, I thought it was only a five mile loop, then as we were parking I googled the map and realized it was actually six miles. I knew that final mile might be too much for him mentally, so I didn't tell him. Then after a while, Dan started to figure it out. He grabbed me, threw me up in the air, then pinned me to his chest and tickled the heck out of me. It made me laugh so hard. I LOVE tricking him because somehow never expects it. He makes me so happy :)
Here's a few cute little geese from the walk. I wanted to try and snuggle them, but they were more interested in eating, and papa goose was eyeballing me with his seriously ominous beak. Goose was not interested in becoming friends.