Friday, June 28, 2013
Wednesday, June 26, 2013
Tuesday, June 25, 2013
Monday, June 24, 2013
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.
Thursday, June 20, 2013
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.
Wednesday, June 19, 2013
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!
Tuesday, June 18, 2013
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.)
Tuesday, June 11, 2013
Monday, June 10, 2013
Saturday, June 8, 2013
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)