Friday, November 27, 2015


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)

Fever, Cancer Incidence and Spontaneous Remissions 

Immunity over inability: The spontaneous regression of cancer

Fever Therapy Revisited

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.



History of left parietal infiltrating astrocytoma status post resection.

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.

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

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

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.


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.

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