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!