Friday, December 25, 2015

Merry Christmas Friends!

MRI is scheduled for this Saturday. Guess we'll find out about deez noodles.

A video posted by Jessica Oldwyn (@happy_coconuts) on



Merry Christmas and Happy Holidays! Thank you for helping me survive my cancer diagnosis, for helping me thrive. For picking me up when I don't have the energy to do this alone. Your support, your laughter, your hugs, and your understanding gives me strength, and a great deal of gratitude. When I was diagnosed and they told me they had nothing to help me get better, it was terrifying. But a day turned into a month into a year into several, and here I am. I've successfully completed three brain surgeries and my dream is to never undergo another. We've found amazing treatments, and I feel wonderful, and happy, and I thank all of you for helping me navigate this exhausting, wild ride. I'm still scared every single day, but it's getting better. When doctors expect you to die, you believe them. But in my heart, when I get scared, I remind myself that every single life, and every diagnosis is unique. I am not a statistic, I'm me. Sending all of you big, big love! ❤️❤️❤️

Monday, December 7, 2015

Bacteria on the Brain Article

Holy cow this is amazing! One of my buddies sent me this article, probably knowing that not only do I love hearing about brain cancer/tumor treatments, but also I am enthralled with bacteria and viruses and how they can relate to cancer growth and treatment. If I ever have to have a fourth brain surgery, I want my brain flap soaked in Enterobacter aerogenes too - and what a surgeon! Dang. A true doctor, and true healer. I love problem solvers.

If you have any problems viewing this amazing article please click here: Bacteria on the Brain.

Tuesday, December 1, 2015

Third Party MRI Results

We have the third opinion MRI report. If you had missed it, we were told by University of Washington that my MRI was stable, dating back for three years. Then, UCLA reviewed my MRI scans and told me that there had been changes in my brain, that the scans were showing recurrence and that I needed to start radiation and enroll in one of their clinical trials. (Click on the above links for the posts.)

UCLA did not review my file before looking at my brain scans, they did not look at my treatments before recommending radiation and the clinical trial. Had I not dogged them and asked many, many specific questions, I would be starting unnecessary radiation. I would be enrolled in a clinical trial for a drug that I do not need at this point in time. The treatment that I do, the dendritic cell therapy, causes some inflammation and slight increased FLAIR, but I find it very interesting that two facilities do not find reason for additional conventional treatments when UCLA made me feel like recurrence was a fact.

It is so important to ask questions, as many as you can think of. It is important to follow your gut, your intuition. You are in control of your body, and to a certain extent, your fate.

Thankfully, my family is stubborn, and we went out on our own to a private facility that reviews MRI scans. They don't recommend or provide treatment, they only analyze the images and report what they see. It's wonderful, and worth the money to get an unbiased review.

I hope you can read the report, it's fascinating. It's definitely the most in depth radiology report I've ever received. I feel relieved, and tomorrow I am going to celebrate by running a one person 5k. It has become my favorite distance.

Thank you for all of the love and support and kindness. I live on an inevitable roller coaster, but today I can hop off for a minute and just breathe.


Garlic as Antibiotic & Diets

Somedays I dink around on the US National Library of Medicine National Institutes of Health. I don't always read about cancer stuff, though. Yesterday I found a cool study showing the synergistic effects of honey and garlic in treating common bacteria like Staph, E. coli, and Salmonella. I was researching treatments for my persistent lung infection (remember that fever I was so excited about?). Anyway, I love finding fun new ways to treat myself, or take care of myself. A few weeks ago my lungs started burning - no sore throat though. And the more I did, the worse it got. I tried running out the sickness (not my brightest idea), and waiting it out. I thought about getting antibiotics, but I haven't taken them since high school. Pharma-antibiotics are amazing, and necessary, but I still like to avoid them at all cost because of the fact that they kill all the good bacteria in your gut, and your gut is not only important for digestion, but it's responsible for 70% of your immune system. I don't want to kill all my good bacteria, so I like to use whole food antibiotics like garlic. I probably sound crazy, but there is actual proof that the allicin and DAS in garlic (most effective when minced and set out for 10-15 minutes) is antibiotic. There's a pretty cool excerpt below, demonstrating some of the proof. There is a link at the bottom to read the study in its entirety. If you head to http://www.ncbi.nlm.nih.gov you can find much more (add words like "garlic", "xdiallyl sulfide", "allicin", "antimicrobial", etc.). Anyway, I started dosing heavily with garlic, two minced cloves every two hours, along with the juice of a head of garlic, 6 lemons, and 8-10 inches of ginger, and low and behold the infection is going away. My cough is almost gone, and I feel much better. Some people don't believe that foods can really make that much of a difference in health, and sometimes I believe them, but that garlic is seriously amazing. I wish food didn't matter, but it does. I would much rather have been eating two cookies every two hours but I can guarantee that there's no antimicrobial benefits from the deserts I like to eat.


Background 

In Ethiopia, people use A. mellipodae honey and garlic mixture to treat different types of diseases such as cold, cough, asthma, diarrhea and respiratory infections. But still there is no any scientific report about the synergic effect of any type of honey and garlic extract. People use A. mellipodaehoney and garlic in various combinations, there is no any scientific report about the synergic effect of these substances. Therefore, there is a need to investigate synergic antimicrobial effect of A. mellipodae honey and garlic mixture.

Research frontiers 

This finding strongly supports the claim of the local community to use the combination of A. mellipodae honey and garlic for the treatment of different pathogenic bacterial infections. So, garlic in combination with A. mellipodae honey can serve as alternative natural antimicrobial drug for the treatment of pathogenic bacterial infections. Further in vivo study is recommended to come up with a comprehensive conclusion.

Related reports 

There are different reports on the separate issues of antimicrobial effects on honey and garlic. However, a report on the synergistic effect of honey and garlic is scarce. This finding fills this research gap and may help base information for further in vivo research.

Innovations and breakthroughs 

The finding of the study paves a way to consider and acknowledge the traditional knowledge for the treatment of infectious diseases using natural resources like honey and garlic.

Applications 

Garlic in combination with A. mellipodae honey can be used as antimicrobial agent to different pathogenic bacteria. As recommended by the author it needs further validation and then it would be important for the community as it is routinely used as food.

Peer review 

This is a very good finding in which the author investigated the synergistic antimicrobial activity of mixture of garlic extract and A. mellipodae honey against pathogenic bacteria. The results are interesting that garlic in combination with A. mellipodae honey can serve as alternative natural antimicrobial drug for the treatment of pathogenic bacterial infections. - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3757282/

The other fun study I found talks about the effects of diet and neurological and non-neurological diseases. It was co-authored by Seyfriend (remember him, the professor from Boston College - the ketogenic diet for cancer guy?). Check this out.....it's exactly my hypothesis, even though it wasn't specifically regarding cancer.

Abstract

Background

Diet therapies including calorie restriction, ketogenic diets, and fish-oil supplementation have been used to improve health and to treat a variety of neurological and non-neurological diseases.

Methods

We investigated the effects of three diets on circulating plasma metabolites (glucose and β-hydroxybutyrate), hormones (insulin and adiponectin), and lipids over a 32-day period in C57BL/6J mice. The diets evaluated included a standard rodent diet (SD), a ketogenic diet (KD), and a standard rodent diet supplemented with fish-oil (FO). Each diet was administered in either unrestricted (UR) or restricted (R) amounts to reduce body weight by 20%.

Results

The KD-UR increased body weight and glucose levels and promoted a hyperlipidemic profile [the unrestricted ketogenic diet lead to increased sugar and fat in the blood, along with weight gain], whereas the FO-UR decreased body weight and glucose levels and promoted a normolipidemic profile, compared to the SD-UR. When administered in restricted amounts, all three diets produced a similar plasma metabolite profile, which included decreased glucose levels and a normolipidemic profile. Linear regression analysis showed that circulating glucose most strongly predicted body weight and triglyceride levels, whereas calorie intake moderately predicted glucose levels and strongly predicted ketone body levels.

Conclusions

These results suggest that biomarkers of health can be improved when diets are consumed in restricted amounts, regardless of macronutrient composition. - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4047269/

Okay so, do you see my contradiction here? At first I say that food does matter because it can kill pathogens, then I kinda say that as long as you're calorically restricting, macronutrients don't really matter when it comes to health. You pull up different studies and you'll get contradictory messages - or at least you could argue different interpretations of the second study. But are they mutually exclusive, these two reports? Absolutely not. They can both be true. One is talking about natural chemical properties in food killing bad bacteria, and the other is talking about how an unrestricted diet high in fish oil, although high fat, normalizes body fat and lipid profiles, promotes weight loss, and lowers circulating blood glucose, unlike UR-SD and UR-KD. Or, if you want to eat a Standard (American) Diet, or a Ketogenic Diet, you'd better restrict your calories by 20% if you don't want to have negative health effects. Macronutrients DO matter, but at least you have options. 

This is what I do when I'm bored. Obviously I should go munch on more garlic so I can reenter society. (I have voluntarily quarantined myself.) One more day and I'll try running again - better do it outside though because I probably reek like a big fat garlic clove.

Friday, November 27, 2015

Thanksgiving

Happy Thanksgiving everyone! Hope you were able to enjoy friends and family - we're back in Friday Harbor, the homeland. Enjoying every moment.

The celebration is not over, but I already have to say that this Thanksgiving is the best yet.

Pre Turkey Trot

Mid Turkey Trot (paused to take a weird selfie) - the race literally runs out to my old house and back. Unfortunately, it's behind Dan's noggin.

Post Turkey Trot

I'll bet we get MRI results this week. M.R.I. That's the last time I use those letters until after the weekend. Dan's chomping at the bit already again, gotta go get bundled up for our morning run.

Love to all!



Monday, November 23, 2015

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


Fever Therapy Revisited


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

Friday, November 20, 2015

It's Okay To Be Weak

Well friends, we have yet to hear back about the third party results, which is just fine with me. For the first time in a long time I'm not anxious to hear the outcome. I just want to relax and not worry, and breathe, and live. I don't have the discipline that I used to. I am unable to restrict my diet, and am unable to rigorously exercise. I do not have the drive that I once had, which was born out of fear. The unfortunate thing is that fear was a bear, chasing me through the forrest, and without that same neurotic stress, I am unable to rise to the challenge of forgoing food, or drink, of pushing my body to extreme lengths for cardio or weights. I walk often and try to jog every once in awhile. I hit the sauna here and there, but I am in a state of relaxation, both mentally and physically. I am literally enjoying every moment. I spent years, several years, after diagnosis, trying wild extreme diets, taking hundreds of pills a day, trying random and scientific based treatments, and I'm tired. I don't have it in me anymore.

I honestly don't know how I ever restricted myself so diligently, so harshly. I'm just bone tired. But I'm happy. I'm thicker, and I don't love that, but I don't have the heart to discipline.

It's embarrassing that I can't practice what I preach, but it's the truth. It has been over 68 months since I was diagnosed, and 65 of those I was on crazy cancer diets. At times it has been a complete obsession. And when it wasn't an obsession it was the root of shame due to moments of failure, or stress from expectation. Living with cancer is living in a vortex. You're here but you're not. You're alive but every decision could lead to your death. Your stakes are impossibly higher than everyone else. I sometimes hear people say things like, "We're all dying." And I think, "What an asshole. Just shut up" The only people who say that are people who aren't in the vice of death's grip, or they're already diagnosed but trying to make other people feel better. There is nothing like living with cancer. You're supposed to just be happy to be alive, yet you're living in a slaughterhouse hearing the screams of your cancer family as they make it to the kill floor. You're being shuffled closer sometimes, and at other times you get shoved out of the way only to lose the friend next to you. It is a terrible emotional state that completely effs your brain. After years of this madness, it has taken such a toll on me that I can't bring myself to live in a state of constant battle. It's just too much. My stomach is so weak now from the years of drugs and supplements that I regularly vomit from queasiness. Last night my head may as well have been spinning, possessed, with horizontal projections - all from an off-label that I have been taking for almost a year. Dan was so terrified that he almost stayed home from work today to make sure I was okay. At a certain point you have to stop. Or at minimum take a break. My body can not take what it once did. Unfortunately, she never ceases to let me know.

I still eat quite healthy, sometimes less healthy (or worse yet much much less healthy) than at other times in my cancer journey, but as I have evolved I've realized that not only has my brain changed, and views changed, my physiology has changed, and my attitude has changed. Every single person in life has their journey. I have absolutely no idea what the purpose of my life is, other than to share my story, and let people know that we are inherently strong, but we should know that sometimes it's okay to be weak too.

Sometimes we ride, and sometimes we carry.

Tuesday, November 10, 2015

UW Radiology Report

University of Washington just emailed me my radiology report, and since I can easily copy and paste, I thought I would post it here in case it might be helpful to others. UCLA doesn't provide a radiology report at their Tumor Board, however in the last post I included their opinion on my brain scan (hint: they think my tumor is growing). Now, because of the differences in opinion, we wait for the private third party review from Iris Radiology to determine if I'm in the early stages of a recurrence or whether the differences in findings are more a matter of MRI reading techniques.

Narrative

EXAMINATION:
MRI BRAIN WO/W CONT

CLINICAL INDICATION:
History of left parietal infiltrating astrocytoma status post resection.

TECHNIQUE:
MRI Head Tumor (Primary) contrast plus post GD SAG T1 (Glioma /GBM)(B 2PT)

Non-contrast Head: Axial T1, axial T2, axial diffusion.
Post-contrast Head: 3D FLAIR (Sag, Ax, & Cor), axial diffusion. Axial, coronal
& sagittal T1.

CONTRAST:
Prohance 15 ml 10/24/2015 08:10 AM INTRAVENOUS


COMPARISON:
Multiple prior MRIs of the brain, most recent dated 3/22/2015.

FINDINGS:
Post surgical changes compatible with left parietal craniotomy and tumor
resection again noted. Surrounding FLAIR hyperintensity is unchanged. There is
no evidence of new areas of enhancement at the resection site or elsewhere in
the brain parenchyma. A right frontal developmental venous anomaly is noted.

Incidental note of small intracranial right vertebral artery flow void again
noted and unchanged from 3/22/2015. Otherwise, the major vascular flow voids
through the circle of Willis are patent.

The ventricles and sulci are unchanged in size. There is stable ex vacuo
dilatation of the left lateral ventricle due to volume loss.

Orbital structures and extracranial soft tissues are normal.

ATTENDING RADIOLOGIST AND PAGER NUMBER
##############

Thursday, November 5, 2015

Updated MRI Results

I'm in my happy place, Green Lake. I mean, don't get me wrong - Edmonds is my home. We've grown roots and continue to be nurtured there, but Green Lake has held my hand throughout the majority of our cancer journey. I always find myself at Peet's Coffee & Tea shop at Green Lake sipping on a matcha latte (unsweetened, almond milk - please don't forget the extra scoop of matcha) when I'm dealing with MRI madness. It's my treat on MRI days. It's where I go to celebrate reports, or stress over the ambiguous findings. 


I'm here in the city for a last minute doctor's appointment, and have been managing the details of our "recurrence" all day (emails, phone calls between doctors and insurance). Here's the information from UCLA. 

UCLA: They reviewed your scans last week [at the tumor board] and feel like there are mild subtle changes so it is suggested that radiation would be a good thing to start at this point. They also mentioned a clinical trial involving an IDH1inhibitor. Perhaps you should meet with them [radiation oncologist & neuro oncologist] to discuss your options.

Me: When the tumor board meets, and there are recommendations given, is there a report that I can access and review? I assume there is some sort of documentation of the process.

UCLA: We don't really have a written report per say that I can provide you.

Me: I'm curious because, when you say there has been progression, I would like to see the measurements, and assessments of the increased disease. As you know I send the copy of the UW's MRI scan to UCLA, along with the radiology report from UW, and their report didn't reflect your findings. It's confusing to me that you would find changes that they did not find.

UCLA: It's been subtle changes over time, of the T2 FLAIR signal. I don't know if UW compared all of your scans.

Me: Yes, the radiology report from UW did compare back the scans for the past few years.

UCLA: Well, they reviewed it at our tumor board and they found subtle mild changes over time. One radiologist might see something different or use different techniques. Also, it was very mild changes. Once again, it might be worth meeting with the neuro and radiation oncologists to discuss your options. Just to see what your options are at this point.

Me: So, is it more of a FLAIR issue as opposed to a nodular issue? 

UCLA: Yes, it's mostly FLAIR. There was no enhancing nodular lesions. 

Me: So, going back to January 2013, I've been doing an immuno therapy, a dendritic cell therapy, and I had recently received a shot about three weeks before the MRI. So I'm wondering if there's any possibility that the treatment could be effecting the FLAIR. If you're concerned about the FLAIR, which I assume you mean brightness - as opposed to size of the area - perhaps it could be correlated with treatment effect?

UCLA: So you started the treatment in January 2013? And how long have you been doing the vaccine, and how often?

Me: Ten shots the first year, then every other month in the second year, then every third month this year. 

UCLA: I mean, yes, that could be playing a part in it too. What I can do is confirm with Dr L that you were doing the dendritic cell vaccine, because that will play a part in how they [tumor board] read it. I'm not sure if they had that listed [as one of your treatments]. I had the Newcastle Disease Virus listed.

Me: Yes! That's the one. Great.

UCLA: Oh, okay. Well, I didn't realize that was a dendritic cell vaccine. And perhaps that could account for some of how they were reading it. I mean it was very subtle, very mild, but as you know as soon as they see any changes they prefer you to start chemo and radiation and do some standard treatments.

Me: Yep, that makes sense. So if it's an increase in FLAIR is that something that a DOPA-PET scan would pick up? 

UCLA: Um, yes, you could possibly have another DOPA, the only thing is that the DOPA is no longer being manufactured. It's not available to anyone at this point, for whatever reason. 

Me: How long has that been?

UCLA: Recently. Perhaps a month. There's other types of PET scans that you can do, though. Let me reconfirm with Dr L to see what she might recommend. I don't think we knew that you were on a dendritic cell vaccine. It could definitely play a part in what they're thinking. I don't really know because I was not at the tumor board meeting.

Me: Well, if you don't mind talking with Dr L to see what she thinks about the dendritic cell vaccine and imaging - along with any possible scans that could be beneficial to differentiate between inflammation/scar tissue that would be great. These scans are very tricky.

UCLA: Yes, well there are differences in reading techniques. You send it here and our radiologists may pick up on something. And we didn't know you were doing a dendritic cell vaccine because that could definitely cause an increase in FLAIR.

Me: If it's an increase in FLAIR that is definitely something to be concerned about. I did, however, have two shots of the pure NDV and then a followup with the vaccine about three weeks prior to the MRI. I had been told to give it at least two weeks between, but who knows, maybe I had a larger effect.

UCLA: Well she definitely said it was very subtle, and very mild. I'll just reconfirm that there isn't another scan or something that she would like. 

In the meantime, I reached out to the German clinic explaining the two differing views and mentioned that we will have a third independent opinion in a few weeks. Today, I received a response that they think a MRI in six months is sufficient. Although they are curious to hear what the third reading would find. I imagine that if the third, independent review, finds a recurrence is likely, we will adjust and increase my immuno treatments. (Among other things of course.)

I also heard back from UCLA and they definitely believe that the dendritic cell therapy could be to blame regarding the FLAIR. They said that they would have read the MRI differently had they known that I was getting DC therapy. I thought that was odd since I have always been open and honest with Dr L. They have all my notes of everything I'm doing and have done. The truth is that they didn't really review my file before the tumor board. 

The recommendation is to conduct a FDG-PET or another MRI in three months. So now I wonder, would they have ever recommended radiation or a clinical trial had they read my patient notes, or would they have considered me "stable, no change"? Of course, we will never know, but I feel much better about this possible "recurrence". 

So the next step? We wait for the review from the independent radiologist. They're not affiliated with any treatment center which makes me feel more confident about their opinions. They don't recommend treatments, only analyze images. They don't take insurance, but at times like this their expertise is invaluable. It will probably be a few weeks before we have more information. Since the German doctors seem optimistically cautious, I feel pretty good myself. They did not recommend moving up my treatment schedule, nor did they recommend adjusting the formula. Since we're just waiting for more information, now I have to figure out how I want to absorb this situation. I feel like it's an opportunity to hit the ground running with my health. A reboot in diet, and exercise, and attitude. 

And it is not escaping me how quickly they were willing to throw me into radiation and a clinical trial. There is a very high probability that my FLAIR signal is just treatment response cleaning out cancer cells. This is why it is so incredibly important to ask as many questions as possible. To hit every target you can. To trust your gut and verify, then verify, then get another INDEPENDENT opinion. I believe that if I would have sent for a third opinion at a treating hospital, they would very likely find a reason to corroborate UCLA's results. There is almost a backroom handshake thing that goes on between cancer centers because they don't want to get sued. They don't want to go against the grain. They don't want to disprove another center's recommendations of treatment because they could get burned by a true positive later. Then the patients get pissed, sometimes so pissed that they engage in litigation. 

You must be in charge of your own care. You must treat results with a heavy dose of skepticism. You must always try to find objective sources to review your files (a place that will not benefit by the outcome of your results). 

UCLA may be correct in their findings. Perhaps the tumor is growing slightly, subtly, over time, but if it's that hard to discern then we should be able to snuff this puppy out! I just need to refocus and quit screwing around. 

The hardest part is diet. I've read and researched so many diets, so many success and horror stories of things working or not working and there are no absolutes. Certain diets work for some people, and other times they don't. I have to keep going back to the basics. The basics are that if you calorically restrict, it doesn't really matter what you eat. At least according to Seyfried's research. I wish I wasn't such a foodie. And by foodie I mean a big portion eater. 



I don't know if you can see the above chart very well, but from left to right the columns are: Unrestricted (UR) Standard American Diet (SD), Restricted (R) Standard American Diet (SD), Unrestricted (UR) Ketogenic Diet (KD), Restricted (R) Ketogenic Diet (KD). As you can clearly see, the Restricted (R) Standard American Diet (SD) actually achieves lower tumor burden than the Restricted (R) Ketogenic Diet (KD). So I'm not even convinced that cancer diets are as much about macronutrients (carbs, sugar, protein), as it is about quantity of food (total calories). Bad news for me the big burrito eating queen. Of course, if you restrict your diet calorically with the Standard American Diet and get those results, I wonder what the tumor burden would be if you restricted vegetarian, or vegan, or paleo, or [insert diet]. I would love to see a comparison of all the various diets under the same parameters. But at least we have this chart to assess. It's a start.

Wednesday, November 4, 2015

First Steps

I can't easily type because I went all gung-ho around the house yesterday, trying to distract myself as we await further information from UCLA about my recurrence, and I sliced myself.


As we wait, I grabbed a copy of all three of the most resent MRI scans (I keep copies of everything) and we shipped them to an independent radiology reading facility that we've used in the past. Hopefully they can give us more information about what's going on in my brain. 

It's always hard when doctors don't agree about your condition, but (as a few people mentioned) it's better than a definitive recurrence. That implies it must not be obvious growth. Either that or someone was asleep at the wheel.

I'll keep you guys posted on anything we find out along the way.

Tuesday, November 3, 2015

Shit Shit Shit. Another Recurrence.

My my mind is all over the place. I don't quite know what to do.

Crap. CRAP. I just got off the phone with a representative from UCLA Neurosurgery. It looks like I have my third recurrence. I don't understand how University of Washington could have reviewed my most recent scan to past scans and felt there was no recurrence, yet UCLA is confident the tumor has grown.

I need more information. I've asked for copies of the notes from the UCLA tumor board, and their radiology review. I've asked for a callback from one of the doctors or physician's assistants, since Dr Liau is too busy to handle me personally anymore. I worry that this is going to turn into a thing. A frustrating thing where I will need more of their scientific reasoning, and proof that the tumor has grown. That I will need to see measurements, and assessments. What about a DOPA-PET scan. Remember that scan that I took in LA back in October of 2013? It's a special scan for low grade gliomas that will differentiate between tumor and scar tissue, clarifying the MRI images. Why didn't they ask for that? Do they think that my tumor has advanced in stage? (Uh-oh.)

I'm not surprised that the tumor has grown, it's what they do. But I'm not going to start a treatment program based on an office worker's forwarded information. I want to talk to the doctors, and the decision makers. I want to talk to people that can answer all of my questions. I am a patient, and I respect my doctors, but insurance, and our money goes to pay their bills. I deserve answers. Doctors are just contract workers. I think it's always important to treat them with respect, but I also believe that we should be treated like peers. If I want/need more information, I deserve to have it.

They would like me to start radiation, and possibly enter into the following clinical trial (clearly I'm going to need more information):

Phase: Phase I
Type: Biomarker/Laboratory analysis, Treatment
Age: 18 and over
Trial IDs: AG120-C-002, NCI-2014-00868, NCT02073994

Here comes another cancer trial, with it, a new motto.



Wednesday, October 28, 2015

UCLA Tumor Board

Morning Guys!

Usually you never want immediate results from your doctor. Fast phone calls after an appointment or scan is often because they have something report. You never want something to report. That being said, I received a phone call from UCLA Neurosurgery yesterday morning. They had received my radiology report (in record time - it usually takes weeks) and they were emailing me instructions on how to upload the images. (Good thing I hadn't mailed the disk yet!) They recently upgraded their computer system and after a dead end at the library, I was able to go to my friend's house and upload the report. It took a total of four minutes! Talk about fast. That's way better than the several weeks it usually takes. It's not that the US mail takes that long, it's the web of the UCLA mail department, then the physical disk has to be uploaded by a UCLA employee. And since I was able to bypass all that noise, and uploaded it on a Tuesday, I was told that my brain scan will be up for review today at the tumor board.

Now, we were pretty excited about the UW radiology report of my brain, but after uploading the images, I scrolled through my brain and was reminded of how huge the tumor is. The amount of haze. The thick white area, and the diffuse area which spans, probably, a fifth of my brain matter. It's disturbing. And scary. After the last MRI we chose not to look at the images, it was too upsetting. That means it has been a year since we looked inside my brain. Naïvely, I keep hoping that the tumor has shrunk, but no such luck.

If we're lucky, we should have an update on the status of my tumor from UCLA later today, but most likely it will be tomorrow. There are a lot of patients who will be looking for their results. Lots of anxious people. It's amazing how these results can completely change the trajectory of your life. Sometimes I feel like I'm living in a labyrinth. That I'm constantly standing in the front of two doorways. I never know what's behind them. I never know where I'm headed.

Monday, October 26, 2015

MRI RESULTS!

Here are the important things:

1. Surrounding FLAIR hyperintensity is unchanged.

2. There is no evidence of new areas of enhancement at the resection cite or elsewhere in the brain parenchyma.

3. A right frontal development venous anomoly is noted. (?)

4. Stable post surgical changes related to left parietal craniotomy and tumor resection without evidence of recurrent disease.

Looks good to us!!!! Time to jump for joy and make Dan a pack lunch for his second shift at work today. At least these long hours can keep his thoughts happy! Thank you for the love and support, and the ride to the hospital from my friend Jozann! What an angel she is. I told her to just drop me off but she wouldn't leave me by myself and stayed with us the entire time. Now THAT is a friend. You guys sure know how to support a girl.

Phew!!!! WOOOOEEEEE!!! Now I can stay up all night reading my book about the Lusitania disaster. Hey, we all gotta have ways to celebrate. Ha!

Final results from UCLA should be in a few weeks, but with no obvious regrow, I'm a happy girl!


Thursday, October 22, 2015

When You Can't Bear it Alone

You guys are so sweet to me. Thank you for picking me up with the kind comments. I always feel awkward by how nice you all are, feeling like I don't deserve it. But it makes me feel incredibly special too - regardless of whether I feel like I don't deserve the praise. It took some time, but little by little I started feeling better. I did it by forcing myself to get out of the house and back into my walking group (other than today, but it's because I couldn't sleep last night and was afraid I might have a seizure). They always make me smile, fill me with hugs, and encourage me - as they do with everyone else in the group. It's more like a mutual appreciation and laughing club, that walks. In fact, I feel like I stole that description from one of the fabulous women in the group. So far I've been taking it up a notch by running to and from the walking group (other than accepting a ride home one day). Those stupid amazing endorphins really do change your mood. It's annoying but true. Aaaand convenient, I guess (she said begrudgingly). 

The MRI is set for this Saturday, with preliminary results on Monday. (I just go to the UW records department to get the results myself - no doctor.) I'm stressed, and not sleeping well, but I've laid off the anti-anxiety pills because I'm afraid I've become dependent in order to sleep. I never want to be dependent on anything. *isnt that ironic* 

As I type this, Dan is taking his three hour nap, he's currently scheduled for four days of 18 hours per day of work (trying to make up for the added expense of heading back to Germany unexpectedly for more treatments last month). Happily it's bookending the weekend so he can rest some in the middle. He's taking me to the MRI Saturday though, and it will be filmed for the upcoming documentary episode. They're also going to film on Monday when we head to get the results. I hesitated for a second when they asked to film, but in thinking about it I realized it wouldn't change anything whether they film it or not. At this point, nothing will change the outcome - other than a miracle. A miracle? But we wouldn't even know if a miracle occurred since we wouldn't have a before and after. And I don't even know what type of miracle would be best. Would the best miracle be that the tumor has not grown? Or is my path meant to teach me more? I don't know. I don't know what fate has in store for me. I have zero expectations. I still have anxiety because I'm scared. Not of dying - although that too - but of the memory of all the pain I've gone through - the brain surgeries especially. I honestly don't know if I can ever handle another brain surgery. I can't even imagine it. I don't want to. Three was enough.

Sweet dreams to all, I think I should head to bed early to see if I can magically get some extra rest. 

Since Dan's working so hard, I've been making him comfort food. Today I tried this recipe (using whole eggs - no dividing into whites, sub white cheddar for mozzarella, double the kale, and the addition of a bushel of beet greens):

http://www.myutensilcrock.com/2015/04/11/kale-and-egg-quiche-with-sweet-potato-crust/

It was a major hit!

Love you guys. Thank you for being my friends, my family. For cherishing me and for helping me bounce back when life is too hard for me to bear alone. You have no idea how much you help me. I am eternally grateful.



Tuesday, October 13, 2015

Impending MRI Impending Life

I don't want to share this. I don't want to say it. I hate that I have to release, but the truth is that I can't handle my feelings. I have best friends, and I know that they would do anything for me. They know that I hurt, but they don't know my pain because I can't tell anyone, not even them. I've never told anyone how I badly I hurt. The pain of this, the diagnosis, the hamster wheel I live on. I give pieces to Dan, to my mom, to my dad, but if I gave any one person my whole sadness, it would be the meanest gift, and I refuse. Yet here I am, I can't stand it anymore. But it's a choice to read; close the window if it's too much.

I would rather cry alone, than burden my friends. I would rather hurt, and sob, by myself, because my friends have their own lives. No one's life is easy. It has taken me years to understand that, but I get it now. I'm a ghost that is here, but that doesn't live. People see me, or my hologram, but they don't know me. I just float.

I was meant to be a mother. I was meant to be a mom. What is my life without that? I found the most kind, handsome, generous, thoughtful, fantastic, man, but he always expected a family too. But now he worries about me. ME. He should have kids by now, he should have that beautiful love from his own children, that sticky snot filled, accidental wet bed, picky eating life, and I can't give that to him. And what is a life without children? Seriously, to those of you who read this, can you imagine your life without your kids? 

That is the life I live every day, that deep sadness. A life where I try to trick myself into happiness. "Hooray, I'm alive." And yes, of course, I should be happy that I'm alive, but what is this? I'm helping other people function in their own families. I'm helping mothers and fathers, born and unborn, and I have become this au pair for cancer patients, for cancer families, yet here I am, unable to have my own life. I hang on the edge of despair, worrying about my cancer friends, but I need to take care of myself and I hate that I can't compartmentalize. But I can't. So I just live sad. I live on anti-anxiety pills. I wonder how I'm even supposed to help because I'm nothing special, just a talker. I'm a not a specialist. I'm not a doctor. 

I've devoted myself so fully to help others, but I need to start focusing on what it means to be 35, without children, barely able to pay for our cancer treatments. I am an educated woman, with degrees, but I bought into what the doctors said about the fact that I would die immanently. So I've been in a mad dash to help others survive, but how am I going to live long term with my treatment responsibilities? I can't just take care of everyone else. And, how do I live my own life? And how do I make Danny's dreams come true? I feel so responsible. I feel overwhelmed. I feel sad. And I wonder what the point of this life is. I have watched others die for various reasons and its all confusing and messed up and it had nothing to do with working hard, or being a good person. I am not here right now because I'm somehow significantly better than anyone else on earth. 

So I just do my best. But what do you do when you know you can't give your husband children. That you've just isolated him. Danny should not be an old man without a family. Without children. Without that special, magical love. So yes, I am alive. I'm alive longer than I technically should have been, but, is this the life I would want for him? Never.

Here I am being grossly honest, and confused. What shall I do with my life? What will I be if not a mother? My heart breaks every day. I cry every day, whether its internal or literal. The worst thing is making others feel uncomfortable, so I try to hide it, dsguise my pain.

But it's the truth. And it hurts me to be real, but I will know in two weeks if my brain tumor is growing again or not, and sometimes I wonder, when I feel this despair, will it really matter? In the sliding door of life, what would be best for Dan?

Tuesday, September 29, 2015

The Ultimate Elixir: Family

I have another infusion today of the NDV. We've just returned from visiting my Polish family, it was the highlight of the trip! Dan finally met Anna, Zosha, Krzysztof, Marcin, and Kasian. I've been battling an infection, and it evolved into my lungs, so I hope I haven't been getting others sick. My brain is all over the place because of my cold, and my exhaustion, but like our overweight cat Bingie, I'm fat and happy. My family treated us like royalty. The food, the love, the laughter. It was so much fun!



Mushroom hunting with the family. It's grandma's favorite activity. 




Checking out the old town of Gdansk where my family lives with my cousins Marcin and Kasia. We walked something like 40 flights of stairs to the top of the church for the best view. My hamstrings are still killing me. I'm embarrassed by how out of shape I've become. For penance I've been doing sets of ten push-ups every few hours in the hotel, I squish it between coughing fits.


Kasia hard at work with the family tree. She and I will continue the family traditions, making sure the family stays in touch forever. It's really crazy, Dan noticed so many similarities between Kasia and I. It's in our mannerisms, we say the same thing at the same time, we laugh at the same stuff, she is my Polish sister. I feel exponentially blessed to know my Polish family. My cousin Marcin is brilliant and thoughtful. My Aunt Zosha is just like my mom, taking care of everyone all the time, even Uncle Krzysztof notices the similarities between my mom and aunt Zosha. It all happened because my dad took an address from an old envelope from family correspondence between elders, and he tracked down grandma Anna while he was in Poland 25-30 years ago for a hemp symposium. She is the matriarch of the family. Once he could prove our lineage (I mean, come on, who just shows up claiming to be family), we have been loved and included into the family ever since. They literally brought him into the home and brought more and more of the family to introduce the American family member that popped up. It was a miracle of kindness, and a blessing in our lives. To have family that cares for us, and we for them, and they literally live on the other side of the world. Thankfully there's iPhones and Facebook so we can text and talk and always be in contact. 


Each family member is perfect, and I just wish we lived closer. But thankfully, my treatment in Germany isn't too far away from my family. It's a gift that I will be going back to Duderstadt for the rest of my life for treatment. It will give me the excuse to see the family often, to grow with them, to stay close and connected. 

Okay, time for another infusion. It makes me tired, and I'm already sick, but I love these treatments because I know they heal my body. I have 100% confidence in this immunotherapy and of my doctor. 



Hope all is well back home. Sending lots, and lots of love! 

I may be sick right now, but my family is an elixir that fills my soul with happiness. Of course, I couldn't leave the family without a braid of their fresh garlic. I've been eating it ever since. Everyone knows garlic is the ultimate cure all. Visiting with my Polish fam was like being home. Not a lot of people get to say that, that they have two homes filled with love and they're halfway around the world. I am overwhelmed by the fortunate life I get to live. The amazing people in my life. 


Now it's time to get bundled up for a walk to the clinic for my infusion. Wish me luck. Hopefully my advancing sickness won't delay treatment.





Friday, September 18, 2015

Medical Honeymoon

Remember how the German clinic asked me to come back ASAP to harvest more dendritic cells? Well? Fortunately, Dan had been banking sick leave for almost a year and a half, knowing this day would come, so he was able to join me. We have a house sitter at home so that Bing the cat won't be too lonely, and Emma dog is with Grammie Linda. With our babies taken care of, we're off on our biggest adventure to date. Originally, the clinic made specific dates for treatment, and we are making our way that direction.

Today we are in Dordrecht, staying with a Dutch family. (We're traveling in a combination of guest houses/loft rooms and hotels working to keep costs down, but also we wanted learn more about the native cultures and there's no better way than staying with the locals.) 

The Netherlands is so charming, and the people are cheery and kind. Dordrecht is the oldest city of all of the Netherlands. The buildings, the churches, it's pure charm. It's sleepy, and fresh. This afternoon, we went for a run around the cobblestone streets, and now after bathing, I've wiggled into a plush blue velvet couch to type. Dan went for a walk to the local market to grab some beer, and wine. We have to take advantage of our gorgeous rooftop patio. 




We already have some local spelt bread, fresh cheeses, and cured meats. I became obsessed with the local veg since they're all grown right here and are dirt cheap - and FRESH. I am gobbling up cucumbers left and right. Pennies on the dollar. In fact, if they grow it here it's dirt cheap. I can't believe how affordable everything is! Now, you won't find pineapple or other luxury perishable items, but who needs 'em! 

I could live like this. Bikes everywhere, birds, boats, walkers, salty air, a calmness. It's everything I could have dreamed of. When we moved from Seattle to Edmonds we fell in love with the slower pace of life. The irony is that Dordrecht makes Edmonds feel like Gotham.

Just a few hours ago we watched, from our balcony, a newly married couple go by. Apparently, it is tradition that the groom from the ceremony peddles his new wife to the celebration. And just as I type this the church bells chime. Dordrecht couldn't be more magical!






Sunday, September 13, 2015

The Carrolls meet THE Carroll

I've been up since 4:00 am and it's all because of a seizure. I've had a seizure in my sleep before (according to Danny - I don't remember it), but on September 11th, just a few days ago, just at the same time as the anniversary of the twin towers collapsing, I was jolted out of bed, screaming to Danny that I was having a seizure. He jumped into action, knowing fully what to do, but I couldn't stop myself from screaming, "Water, pills, water, pills, water, pills, hurry, hurry!!!" It was like I was in a trance. A trance where you can't feel or move your right side. A trance where you have no control over your body, or your mind. It was powerful, but not a grand mal. My whole right side, from the tip of my toes to my cranium was tingling and throbbing. I was paralyzed, even unable to drink on my own. Danny held a glass to my mouth as water sloshed all over my face and neck, soaking our mattress. When the seizure subsided, I couldn't talk or think or make sense of what had just happened. So here I sit in the dark while most people sleep. I don't sleep because I'm afraid to. I don't know how long this fear will last, and I know it will abate, but I wonder if this new experience will stick with me forever. Will I always have a deep-rooted fear of a sleep seizure? Is this going to haunt my dreams, nestle into my subconscious?

Ever since I was diagnosed I've been afraid to miss anything. I want to soak up life, to enjoy every moment. But sleep is paramount too. I'm not sure what I'm going to do about this new found issue. I live life big. I laugh and jump and dance (albeit ridiculously), but I'm fearful too. I may be the happiest yet most terrified person on Earth. I'm scared every single day that the mass in my brain will grow. I'm scared every single day that I may be one of the ones who die young and I won't be able to stop it. I'm scared every single day I'm eating the wrong thing, drinking the wrong thing, putting the wrong product on my body (the toxins), that I'm too near the wifi, that our water has too much crap in it, that I'm not exercising enough or that I'm exercising too much. But what permeates the most in each moment is that I'm scared every single day that I will have a seizure. And now, to add to the list, I'm scared that I'm going to be woken up mid-seizure. It's like waking up to the fire alarm, but it's not a drill, there's a literal fire in your brain, and it's surging through your body. And when it's over, you're ravaged. You're wiped. You're almost ruined, but you know you have to rebuild. And with any disaster, it's the aftermath that takes the most work.

The irony of everything is that I was jolted out of bed with that nasty seizure on the morning I was to go to a Seahawks practice. The day I was going to meet coach Pete Carroll. Dan was temped to cancel because I wasn't making sense and my face was droopy, but I begged, and I pleaded, and he tilted his head, squinting, and said okay. The unfortunate part is that one major side effect of my seizures (although I'll bet it's common with many) is memory loss for about 24-36 hours. So, being the stubborn cuss that I am, not wanting to miss out on the opportunity, or wait one more day to meet Coach, that I will have to work very hard to remember our special time at the Seahawks practice. The whole day was surreal. I shook hands with Bobby Wagner. (What? Yep, that happened. He may be my new favorite.) I watched Beast Mode get stretched out right in front of me. He was talking - I saw it. I watched Sherman bounce around from crew to crew. I noticed Russell working on the QB stuff, I could see the smoke drafting from his ears with the laser focus. I chatted with the Seahawks crew, and laughed. I tried to push one of the things that the linemen push, the metal things with the pads that simulate the opponents, and I'm pretty sure I moved it a millimeter. When the practice was over we talked with Coach which was awesome! There's an amazing familial vibe, a camaraderie. Everyone was jovial, but dialed in. I joked about how I wanted so badly to run out there and jump in, to race anyone who was willing, but of course I stayed on the sidelines. We were the only onlookers that weren't part of the team or media. It felt crazy, and profound. I have a deep respect and love for the way that Coach Carroll handles the sport, the players, and life. He practices with the players, running around, sweating like the rest of them. He believes everyone has the chance at greatness, his motto, "Always compete."

The older I get, and especially since I was diagnosed, I don't enjoy competing as much with others (maybe it's because with cancer, we can't all win and it's not our fault - it's often out of our control), but my internal competitiveness has never gone away. It's what helped me strive to learn the alphabet, and talk, and read, and write again. It's how I was able to start walking as soon as possible, aided by Dan, and my friends and family. I always knew I could do better, that I could do more. And I still look to challenge myself (even if it turns into a hysterical near disaster like the recent triathlon). If life was a drink I would gorge myself, while trying to jumprope and cook dinner and garden and read a book and run in circles. I want to do it all as much as I can. But in order to recover from all that madness first, I'll have to get over my seizure fears, and just get some sleep.

The lair.
Wait, what's that? Oh ya, we're here with Pete. 
An O'Carroll family photo. 
My, I can't believe I'm at his press conference face. As he walked away, he jokingly said, "And any further questions to you Dan and Jess?" Ha! Good one Coach. Yep, Pete Carroll knows our names.
The TSA checking the busses, and gear so that the team can just roll up to the plane. They were flying out to St. Luis when we rapped up. Go Hawks!



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