UCLA MRI Results: Surgery Needed

I finally received my secondary results from the MRI. Unfortunately, UCLA believes there has been interval progression, and they are recommending brain surgery. I don't know if I could stomach a fourth surgery, but before I can commit to that anyway, I've requested a f-DOPA pet scan to verify that it is indeed tumor growth. F-DOPA pet scans can differentiate between tumor cells vs scar tissue or inflammation.

It's confusing to hear conflicting results from two different centers, but that's nothing new for me. At this point, I'm waiting for insurance to approve the scan. Next, we'll schedule the scan, and then we will review the results to see if we are dealing with a recurrence. Between now and then, we scramble for alternative plans for survival. I know that sounds alarmist, but I say it with tongue in cheek.

As always, I'll keep you abreast. (That word always makes me laugh, so I had to throw it in there.)

PS It's my brother's birthday today, so if you see him, please don't say anything until tomorrow! xo

Don't Fear Germs

I'm miserable. But I'm excited.

I've had a temperature for a few days. At first, I just thought it was weird how much my body was hurting. My bones, every single bone in my body was full of needles, and I joked with Dan that maybe I had contracted meningitis. (I love to throw out the impossible and laugh.)

Looking back I had been noticing for the past few weeks a pain in my lungs. A burning, hot, achey sensation that I'm not used to. On Saturday, after I had written my last blog post about my lack of exercise, I became inspired and went to the gym, punched 5k in on the treadmill, and went to town. My goal was to finish the one person race in under 30 minutes. It was a little hard with the burning in my lungs, but I was able to complete it in 29:17 so I felt amazing. I did it!! Then I proceed to hack a lung. The weird part is that the stuff in my lungs isn't getting loose so the coughing didn't last.

The weird thing is that I've been feeling hot for the last week, and achy. But I always find a way to reason it out.

This brings me to yesterday. Finally, so miserable that I couldn't move, so miserable that it was hard to walk, it occurred to me that I should check my temperature. And sure enough, 104 was hitting heavy. When I saw that I had a fever I was thrilled. I leaned over and high fived Dan. Weird right?! But it isn't weird. I had read a few months ago that when you get a fever it stimulates your immune system, including the production and release of t-cells which also happen to love to eat cancer cells.

There are several cases documented of people who get fevers and it causes a regression of their cancers.

Once I learned the fever thing, several months ago, I have been trying to catch germs when people are sick. A long time ago I read a retrospective study about people with glioma. It showed that those who get diagnosed with glioma were described as people who stated they never usually got sick or had broken bones. I thought that was interesting, and I easily fell into that group. So now, I'm trying to rectify it by purposefully enhancing my immune system by putting myself in positions where I can snag a fever. Lucky for me, my nephew is practically always sick and a few weeks ago the sweet little bugger was flaming hot, and coughing. I took deep breaths around him, and hoped for the best, even sipping on a drink he had. I did it discretely. Now, maybe I'm just crazy, but I literally never get sick. I haven't had fever since September of 2012. I specifically remember it because it was right before the most recent brain surgery and I was worried it would interfere with the procedure.

So here I am, chilling with a 100 degree temp, and although achy and physically pretty miserable, my mind is partying. I did it! I earned a temperature and as those pins and needles ravage my body, I imagine my t-cells and cytokines swimming around in my body looking for foreign invaders of bacteria, and viruses, and tumor cells! I will not take aspirin to lower my fever, I will just ride it out. And to explain my reasoning, I sent some articles to my parents and Dan so that they would understand where I'm coming from. When I talked to my mom this morning she was impressed and agreed that she would reevaluate how she handles a fever too.

A fever is a wonderful response, it's like a free housekeeper.

It looks like we've been trying to stop the fevers, when actually that is a detriment to our immune system. This is great to know! Especially if you have kids. There is a lot of information out there showing that people that grow up with fevers (as opposed to people like me who usually never get infected) have a much less probability of getting a malignancy later. Note to self - try to ride it out, but monitor any significant changes.

Anyway, I'm still a little delirious and I don't know what I'm leaving out on here, but hopefully you can get the picture and do a little research on your own.

It's miserable riding it out, I'll admit, but I'm excited about my immune response, so I'll smile through the pain.

Here's a great article from Nursing Times discussing the benefits of not giving patients paracetamo for fever. The next article is a few cases of spontaneous remission after fever. It's fascinating. There are also all kinds of research studies that you can look up online. If you're really curious, look into William Coley's treatments in the 1800's. I hope this random post helps people become less fearful of germs, and viruses and bacteria. Because there is so much that we don't know. Now, I may still be completely insane, and I may be completely off base to want germs, and to initiate fever, but heck - why would doctors try to imitate hyperthermia for cancer patients all over the world as a treatment? (It's a widely accepted form of treatment all over Asia and Europe.) There's something about this concept, and I just got my fever treatment for free! I do love a good deal. :)

Nursing Times (oh crap - they allowed me to read the article once but is now restricted to members)
http://www.nursingtimes.net/does-giving-paracetamol-to-lower-raised-temperature-interfere-with-the-bodys-natural-defence-response-to-infection/5010217.fullarticle

Fever, Cancer Incidence and Spontaneous Remissions 

https://www.samueliinstitute.org/File%20Library/Knowledge%20Center/Publications/meuroimmunmod.pdf 

Immunity over inability: The spontaneous regression of cancer

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312698/

Fever Therapy Revisited

http://www.nature.com/bjc/journal/v92/n3/full/6602386a.html

Ahead of Ourselves

Yesterday, my adorable little niece and I created our morning green drink. We added a banana, and then stuffed the blender with handfuls of kale. Then, poured some water in the base and Isla flipped the switch. We watched the drink swirl, and as it chopped, I pulled orange flavored fish oil out of the fridge. I love young children because they don't have any preconceived notions. She never said, "Gross! Fish oil?" like an older child might have. I unscrewed the top, sniffed it, and said, "Yummy! Smells like fresh oranges." I passed the glass over to Isla, and she agreed. When the drink was finished blending, we poured it into a large pint glass, adding two tablespoons of the fish oil. We stirred it together and tried a taste. Isla loved it, so I poured a glass just for her. If you look closely in the photo above, you can see the green goo on the sides of her mouth.

It's always fun hanging out with Isla. She's adorable, and hilarious, always willing to try new things. I'm incredibly disappointed that Hermie grew. The day before the MRI, Danny looked at me, smiling, and asked, "If the MRI is good, how many good MRIs will it take before we can make a baby?" Obviously, we were getting ahead of ourselves. That's hard to swallow.

Also, I should clarify from the previous post that my doctor does not agree that the tumor areas are less dense - that is just our opinion.