14 Years Later

 

I was told I would never live this long, that I would be lucky to see 4.5 years. Today, 14 years ago, I was diagnosed with a honker of a brain tumor, and four brain surgeries later, I'm still here.

It's an endless saga of treatments, research, medicine, fear, bloodwork, MRI's, seizures, new opinions, old drugs, new drugs. Living the brain tumor lifestyle, rather than fighting against it, has given me so much more insight into what might be possible.

I remember thinking, "As soon as I get rid of this tumor, I can go back to living a normal life." But somewhere along the way, I realized, I couldn't have both. I couldn't go back to living a life not centric to cancer. That in order to thrive, I had to completely evolve my thinking and actions. 

My health is paramount, my research and ever evolving wellness is a gift that I give myself.

I don't have social media, but I will post updates here, from time to time. Thank you for the love and support. 

I can't believe I'm still alive, playing here on Camp Earth. It's fucking awesome!! 

Even if Just for Today, We Persevered

Each moment bleeds into the next, with so many responsibilities, so many tasks to complete. It's exhausting. But, today, we did it! This morning, it took walking around the UCLA campus to different departments, a lot of explaining, and some phone calls, but we completed our mission. Thank you to everyone who offered their assistance, and appointments, I didn't see all those until later, but it ended up working out! You guys are AWESOME.

Sometimes in life, no matter how creative, and persistent, you get, you run out of time and options, and I'm just thrilled that we were able to fulfill this need, this desire. 

I completed the pre-op MRI this evening at a UCLA alternative location (Santa Monica). Same style, 3 tesla machine, which was important to me, because I want my radiology reports to match. MRI machines can have different strengths (ex: 3 tesla vs 1.5 tesla), also they can have different amounts of slices (ex: 1mm, 2mm, 3mm vs 4mm). My goal is to keep everything as standard as possible between scans so that they're easier to compare. Anyway, they were able to facilitate the same pre-op scan that was scheduled for Thursday. The functional MRI is still slated for Thursday afternoon, which will determine if I'll need to do an awake craniotomy or if I just get to take a sexy little horror movie nap.

My relief is palpable, if not temporary, for the stress of tomorrow's cognitive and competency testing which will be several hours of mental acrobatics and interviewing. These test are a baseline for when I get out of surgery, to compare any possible deficits. That way they'll know what kind of assistance I may need (physical, language, and/or occupational therapy). 

Wearing Resilience socks, thinking about all the other patients out there in my same shoe....er.....socks?

I'm bone tired, but elated that I was able to follow my intuition, and find some answers in all of this madness. I'm not expecting a miracle of healing (although I never rule anything out), but I am a tangible person who needs explanations and information to feel comfortable about big decisions. 

I understand that I am living with brain tumors up in this noggin'. I'm not pretending anything otherwise, but I feel incredibly capable, and healthy, and before I can comfortably sacrifice my body to the table, I have to feel assured. Even though this is my fourth brain surgery, it has not gotten any easier. In fact, I'm noticing that everything is becoming more difficult. I'm losing my pain threshold, I can sense my body, my spirit, remembering the trauma of all these surgeries, especially the one where I almost died. That pain, that subconscious awareness surged through me today as they inched the MRI needle closer to my vein. It was in the powerful magnet of the MRI that forced every cell in my brain to shift in different degrees, to manipulate my fat cells, and water cells, the tissue forming into just the right image to see what is going on in my head. It took everything in my being to hold back a seizure. To hold back tears of how brutal my body has been and continues to be treated. 

If she [my body] was a person on her own, my poor little Body, I would want to take her by the hand, and pull her close. I would rock her, in empathy, and hum her a beautiful melody. It wouldn't change the damage, but I would do everything in my power to console her. 

She's done so much for me, and I keep abusing her. 

It's not what I want, but my choices are limited.

Can't Fly Blind

Been scrambling to get a MRI since Friday, because I know that I can't walk into this surgery blind. I haven't seen what's going on in my brain for almost two months, and things can change. I'm not saying that the tumors are gone, or that they've shrunk, or even that they haven't exploded in growth, but my intuition keeps nagging at me that I must know what's going on up there before I am at peace before the bone saw.

I don't think my request is that unreasonable, however, it's just not how things are done in medicine. Right now, if nothing changes, I'm scheduled for my MRI, and fMRI, this Thursday, the afternoon before my early morning checkin for tumor removal. The problem is that radiology reports take 24-48 hours to complete, and I've been told by my surgeon, and the team at UCLA, that we won't have that report in time for surgery. Apparently the actual radiology report (which measures changes from previous scans, and compares growth, etc. isn't necessary for surgery).

But what if there are changes? I don't even know what's going on up there. 

I don't know why I need this so badly, but I don't want to lose my surgery date, we have uprooted our whole lives, taken time off of work, set up help at our home for our cat, traveled, adjusted, planned, and now I'm told that even with a week's notice, I can't get an MRI to see what's going on in my brain.

I asked for an additional MRI to see if we could facilitate that. I offered to pay if insurance doesn't cover it. We have called facilities all over the Los Angeles area and I can't get an MRI without a doctor's referral. THIS IS MY BODY. THIS IS MY BRAIN. Why is it so difficult for me to get this simple request?? I am the customer. I have insurance. What is going on here, in medicine, that I cannot be an effective advocate for my body?? It is not unreasonable for me to get a 45 minute MRI before a surgery, to be put at ease, so that I can undergo a life or death situation. Let's face it, it's a very dangerous operation. This is not a broken bone, it's my mind they're digging into.

I don't want to push back the surgery date, I don't want to work with anyone other than Dr L. I have 100% faith in her, and I am grateful for her compassion and meticulousness. She's brilliant and I absolutely adore her. I am incredibly grateful for the opportunity to be her patient and to have the ability to get whatever amount of tumor she's able to successfully remove, but I just need to see/know what's going on in my head before I can feel comfortable. I'm even having dreams about it. The desire is permeating everything I do. My intuition is going full force. 

So, dad and I woke up in the 5 am hour and we're headed to UCLA neuro today, to talk to people face-to-face. To be clear (since writing may not convey my tone), I'm not angry, I'm just hopeful that by sharing my deep need, and being available all day, perhaps there will be some people working there that can help facilitate my needs. I know I'm being a pain, and that it's an abnormal request, but I just feel this so deeply. 

My gut has served me in the past, and I won't start ignoring it now. Even if the tumors are shockingly massive, at least I will know, and I can be prepared for what lays ahead.

I call her Mary, our Jasmine vine.
She perfumes us as we leave, and cleanses us every time we arrive.

UCLA Tumor Board Results

Dang it if brain tumor life isn't confusing. At least in my world! I can't be the only one who has these types of yoyo results. I mean, it's better to have differing results than a truly horrible, obvious situation. The ups and downs, though are insane. 

If you don't want to watch the whole video (3 min 44 sec), the short is: tumor is growing, albeit slowly. (Think millimeters.) I believe the two treatments I added in the past two months, are helping - who knows, maybe the tumor had grown more in the interim, and now they're even shrinking it? Who knows! I rule out nothing.

My neurosurgeon at UCLA offered a brain surgery to remove whatever she can, or she said she is "comfortable" waiting 2-3 months for another stealth (pre-op) MRI. I opted for the latter, and agreed that if I had furthering symptoms, I would move up the scan.

Some people might think I'm crazy to push-off brain surgery, since I have a growing tumor in my brain, but there are inherent risks involved. Remember when I had to learn how to walk, talk, read - learn the alphabet again?! I do. We will never know for sure if the decisions that we make are the best ones, but a decision is what we have before us. For now, we try to do the least invasive approach. If that isn't enough, we will evolve as we always have.

It's confusing because the symptoms of my seizures are the same symptoms that tumor growth would cause. The main take away right now is that it's important for me to stay the course on exactly what I'm doing treatment-wise, and perhaps even add a few non-toxic, whole body health boosting things. And I really need to lower my stress levels. They directly cause extra seizures, and that makes diagnosing possible tumor growth, very difficult.

With all that being said, I should go to bed. I have a big day planned with a bunch of friends tomorrow. We're doing a nature hike in an old growth forest. I'm so excited! I'll be sure to hug some trees for all of ya. ;-)

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

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

##############

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.

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.

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?

Moving Up The MRI

Oh man, my face has broken out into blisters. Good grief, I am a ball of stress. This always seems to happen in the days/weeks before an MRI. Seriously, sometimes I feel like I'm a woman trapped in a neurotic miniature chihuahua's anxiety problems. Between the seizure and my skin, I am getting some major warning signs that I need to get this MRI over with. I'm scared, like usual, and no matter what I do (nap, meditate, walk, garden, clean, work) things do not seem to be getting better. Last night I was texting back and forth with my bro, and I sent him this quick pic to make him laugh (and illustrate the blisters).

What is it with skin; when you have skin problems it cuts you to the core. And hell, it isn't even necessarily the vanity, these suckers hurt. To try and abate the issue, I just called University of Washington to push up the scan schedule. I should be getting a call back within 24-48 hours to see if I can just get it over with on Saturday (it was supposed to be April 4th). That would give preliminary results on Monday. As you guys know, I get my brain scans here in Seattle, then I mail the disk to UCLA and they usually submit to the tumor board. I tend to get their results in a few weeks, but since the scan takes place at UW, I can head to the UW medical records department and get a copy of the radiology report. That would give me the results I need. Good or bad. Scary or not. I could have answers by Monday. Monday. Wow. That just made me lightheaded.

Isn't it weird how scary it is to get an MRI when the truth of the matter is that it's just a snapshot. It's a peek into whatever is already happening in my brain. The MRI won't change anything. It's only a fancy internal camera.

Do I feel any worse? Do I have special symptoms? No, not really. I'm always tired, but I think that's pretty standard since the first brain surgery. What will I do if I have a second recurrence? Jeez. I don't really know. I have a file in my email account that's labeled "possible treatments" and I'll need to review that information this coming week. Worse yet, what if all of these off labels drugs, and different treatments have encouraged a more aggressive tumor? What a nauseating thought. Well, if I do have tumor growing back, and it's uptaking contrast dye, that usually means that it would be a higher grade. And if that's the case, then eff bomb. I guess we'll scramble for a new path, or stay on the same path but pack on additional treatments.

What a weird life I live. I'm constantly in troubleshoot mode, always scheming for backup plans, always preparing for surprises so that I can be ready. I never want to walk this earth, with this diagnosis, unprepared. It's interesting, I read an article earlier today about a woman who was diagnosed with GMB (glioblastoma multiforme - stage 4 brain cancer) who went to Duke for an immunotherapy over 9 years ago. She was quoted saying that her father (or maybe it was her grandfather) beat cancer twice in his life and lived to almost a century. His trick was to go back to living life, and so that's what she did. Man that sounds nice. I wish I could do that. I wish I could get out of my head, but I can't. What a beautiful choice to make. Of course, if we all just went back to living our lives after cancer treatment, and just did what we wanted, we might not have as much research. We might not see as many advancements. If we don't drive demand and share information, and keep this momentum, then what? I guess it would work if cancer care was more effective. But the truth is that most brain cancer patients die, and if we all just went back home and enjoyed ourselves, most of us wouldn't be here.

That woman was a part of an amazing clinical trial. Lucky for her she was in the treating group, the placebo group patients are all long dead. And the majority of the others in the treating group are also dead. So maybe she just got lucky? There's always a small sample that responds to treatment, at least for a portion of time. And for the record, I don't mean "lucky" in a snarky way. I am relieved that her treatment worked. Does everyone have to become an advocate? No. That would be crazy for me to say. People have complicated lives, different stories and responsibilities. As my mom would say, "Do what speaks to you." We all have different causes that we believe in, and just because you get diagnosed with brain cancer doesn't mean that it has to become your cause. But, man we can move mountains together. What if she started spreading the word about how well her treatment worked? What if she mobilized funding to run a second clinical trial to create more survivors? Of course this is all easy for me to say, I mean, what have I really done? But the truth is that I've been using morphing cocktail approaches which means I can't pinpoint just one thing on my protocol that has produced my stability. If I could specifically credit one treatment for my success, you'd better believe I would be trying to figure out a way to get it to the masses. Instead, all I can give people is critical thinking, hope, friendship, and resources.

There is no wrong way to handle your life, your cancer. I hope I'm not coming off judge-y. I guess the perfect fix for me would be a little less cancer cancer cancer, and more just live my life. It's a balance,  a very important balance (says the girl with blisters on her face), but my mantra, or more appropriately mission statement, is, "An advancement for one patient is a benefit to all patients." It's actually a statement that I made to a caregiver in an email recently. And it's exactly how I feel. Even though I'm not great about correspondence (if I was to respond to all emails, calls, texts, comments, I would be stuck on the computer or my phone all the time), I work very hard to help connect patients with the information and resources that they need. If I end up having a clean/stable MRI next week it will be just shy of five years from diagnosis. It would also be 2.5 years of being stable. Oh man as I write this I can taste the desire for a good result. I can viscerally feel it. Anyway, I have worked very hard to help people, and I will continue to do so. You all have helped me so much, and continue to help, and my gift is to give back. One of my favorite wonders is the humanity that we share. That we can do so much more together as pairs, as teams, as groups. We're better together.

Out of The Shadows

Ugh, the dread in my body in having/needing to write this post has been weighing on me for quite some time. Like months. How embarrassing! Why can't I be fearless? Why didn't I just start talking about it from the beginning? That way there wouldn't be a buildup. I avoided it because I didn't want to deal with people's opinions. I hate bringing up controversial subjects (unless it's face-to-face where there's an open dialog), and I hate to be judged - which is weird because I have been taking control of my health, no matter the cost, definitely to the chagrin and disapproval of several of my original doctors.

I've been dragging my feet because I don't know where to start. And there are so many details as to what helped me make my decision. I know that I can't include them all because it would be exhausting, and verbose, and complicated. I'm nervous because I feel like I'm not going to be able to really explain myself. Suffice to say that I have joined private groups, and read the research, and talked to, and met with, 40-50 cancer fighters who have shared their private stories about personal cures and cancer stabilization. What is it, you ask? It's hemp oil. Also known as Phoenix Tears, or Rick Simpson Oil. You can also just call it medical marijuana or marijuana extract processed into an oil. There's a lot of names out there, and they're not all exactly the same, but they're pretty similar. I have several cancer friends who are using it in very large doses (1-2 grams a day) with dramatic results, and I have other friends who take it in small amounts and they're still getting results.

Does it work for everyone? Unfortunately not. But, as a person who lives in a legal state, I figured (after researching, and talking to fighters who use it as treatment) I might as well add it to my protocol. You might think I'm crazy, or that it's overkill, since I have now gone two years without tumor growth, but I'm sure you've heard me mention the fact that tumors are crafty little fellas that weasel their way back even during treatments. It's almost as if you're never safe. The moment you think you're golden, it'll rear its' ugly head.

I'm sorry that I'm not going to thoroughly explain the facts of my decision, but I figured at least I would throw it out there and you can research for yourself to decide if it's a legitimate form of cancer treatment, or seizure treatment. Ultimately, I am embarrassed that I was hesitant to share. People are constantly telling me how surprised, and grateful they are about my willingness to open up, but everyone has their limits, including me. I would have been perfectly fine keeping this private. It would have kept me from being judged, which is incredibly appealing, but you know what? This isn't really about me. This is about an amazing seizure and cancer fighting treatment that I think everyone should have access to. (I mean, come on, why else would they be doing cancer clinical trials with it!? It's because there's something legitimate about the plant's properties.)

When I started, I was doing the Rick Simpson protocol. You start with a dose of the oil in the size of a grain of rice three times a day, for four days. Then you double the dosing for the next four days, then you double again and treat for four days, continuing the schedule of increased dosing until you hit a gram per day. I worked up to three grains of rice three times a day. It was awful. I hate feeling high. It made me unable to function. But, it was during the month before the MRI and I was really scared about the scan, so I tried to dose up as fast as I could. What I found was that, although I hated the "high" feeling, it was magic for my anxiety (duh), and stress (duh), and sleep (duh), and seizure activity, and skull pain which is invasive, and constant. I don't really complain about my pain because I feel like dwelling on it exasperates the issue. But it is real, and never used to go away, and the fact that medical marijuana mitigates those issues is amazing to me. It's not a miracle, and it shouldn't even be a surprise because there is tons of literature and research to sustain those claims. It's not just my word. As an aside, the day that I had my seizure, I missed two doses of oil because I wanted to be 100% with my wits about me as I was waiting for the results of my MRI. I wanted to be able to process the information in an objective way in case we needed to make major decisions.

I buy the oil from a co-op that rigorously tests their products, and it comes in a 2:1 ratio of CBD:THC. I currently work with a 48% CBD to 24% THC, but I want a second oil with a 0.3 % THC level because then I can take as much as I want throughout the day (don't forget that the CBD doesn't have psychoactive effects, and it's the major seizure stopper). That's the goal, to be able to dose all day long to prevent seizures. I have since stopped taking it during the day, instead I dose at night, a few hours before bed. Ingesting the oil orally takes three hours to get into my system, although for others it's different. I would still take the higher THC oil, I would just continue to ingest that specific oil before bed to avoid any unwanted side effects.

Here are two wonderful videos that I hope you will take the time to watch. They explain a lot:

I feel crazy saying what I'm saying about medical marijuana. I believed a lot of the negative hype about weed, but as a gardener, researcher, cancer fighter, epileptic, and take charge kind of woman, I have drastically changed my stance on marijuana. I am in awe of it. And I feel like people should have the right to grow and ingest a plant. I realize the complications of teens, and recreational use, and impairment while driving, etc. but I'm getting very sick of people telling cancer patients what they can and can not do with their bodies. We're forced into toxic treatments that don't have acceptable success rates. You guys know me, I follow the Hippocratic Oath of, "First do no harm." Some people debate on whether or not medical marijuana causes harm, but it is not deniable that radiation and chemo are much more destructive than hemp oil. No one has ever died from it. You can't overdose. An overdose of hemp oil is just sleep. That's it.

I have friends in states across the country who are fighting active stage four cancers and they deserve the right to try whatever they need to survive. Period. That is why I am sharing my story about my medical marijuana use. My friends don't deserve to die just because of where they live. They should get to have access to the same life saving treatments that I do. They should have the right to improve their quality of life, to abate their pain, and sleepless nights, and overwhelming anxiety.

I feel like I'm leaving out so much, and I'm very nervous to hit the "post" button. It's scary to put yourself out there to be judged, for people to have opinions about the choices you make in your life. But it is important for me to be an advocate, to step out from the shadows, and be honest about the incredibly wonderful effects that marijuana has had on my life. No one could be more surprised than me. I am exceedingly grateful that I continued my research and was able to keep an open mind so that I could benefit from this amazing plant.


Here are a few teasers, but please do your own research and decide what you think.

Multiple Cancers
"Cannabinoids could provide unquestionable advantages compared to current antitumoural therapies: (1) cannabinoids selectively affect tumour cells more than their nontransformed counterparts that might even be protected from cell death." - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1617062/

Breast Cancer
"Analyses of the tumors revealed that cannabinoids inhibit cancer cell proliferation, induce cancer cell apoptosis, and impair tumor angiogenesis." - http://www.molecular-cancer.com/content/9/1/196

Brain Cancer
"Results obtained by our group and others during the last decade have shown that THC, the main active component of marijuana, reduces the growth of different types of tumor xenografts including gliomas."- http://mct.aacrjournals.org/content/10/1/90.full

"Both cannabinoids (THC & CBD) can reduce cell numbers by inhibiting cell-cycle progression and cell growth as well as by triggering apoptosis and engaging autophagy (19), and are also antiangiogenic and antimigratory (15). The two compounds have also been combined in a preparation that is currently licensed to treat multiple sclerosis, which is now undergoing trials with glioma." - http://mct.aacrjournals.org/content/early/2014/11/12/1535-7163.MCT-14-0402.full.pdf+html?sid=c0dd7be7-3079-4308-96f2-3393d5e28e62

How do we celebrate?

I never thought I'd feel this way. I never thought that I would use these words, and for good reason. Doctors don't use the term "remission" for brain cancer, because "it always comes back". At least that's what all of my doctors have said (minus my neurosurgeon at UCLA, I haven't heard her speak in absolutes). But today, I feel like I'm in remission, that I'm cancer free. I'm sure I still have cancer cells in my body, like we all do, but something feels different. I feel lifted, and whole, and healed. Does that seem crazy? It feels crazy, but it feels right, like I'm on the correct path with the appropriate protocol.

 
I don't want to jinx myself, so please knock on wood, but for the first time since diagnosis, I feel human. I feel normal. I feel like an epileptic (that may never change), but not a cancer patient. I'm continuing all of my current treatments, but now I'm doing it by choice not out of duty. And I know that this shift alone will do wonders for my psyche.

I never thought that my MRIs would get pushed out to 6 month intervals. It crossed my mind once or twice, but it was like imagining a unicorn. A wonderful thing to smile about, but not a reality. But the world tricked me, see - unicorns DO exist, and I love them! 

I keep thinking about this insane tumor diagnosis and how much it has changed my life. I have gone through so many wild things, like the awake brain surgery, or the hematoma that caused major brain damage, forcing me to relearn everything from using a fork, to learning how to run again, and read again, and regain my vocabulary. There were times when I couldn't even understand concepts. My IQ was ridiculously low. I remember undergoing hours and hours of testing only to be told by one of the top neuropsychologists at University of Washington that I would never recover and read again, that I would never be capable of high level thinking or processing. I remember sitting in that same doctor's office with Dan as we went over the results, as tears streamed down my face. Man how things have changed. Not that I'm that smart, but I'm more than getting by. 

So what do I do now? How do we celebrate?!? For starters, I have decided to start training for a half marathon. I haven't run a half marathon since before I was diagnosed, and have been hesitant to push myself too far because I was afraid of seizures, exhaustion, running down my immune system, elevating my blood glucose for long periods, you name it, I was scared of it. But, I was very inspired while watching the Iron Man coverage this weekend, and I reminded myself that life is short, do what you enjoy.  So I'm starting with a half marathon in January, and my other goal is to do ChelanMan in July, the Olympic length triathlon. I don't know if you guys know this, but when I was diagnosed, I was supposed to participate in the Olympic ChelanMan that summer (I was diagnosed in April) but obviously, that didn't happen. I feel like things are coming back around full circle. I honestly never thought this would happen. It would have been too much to hope for - to live a normal (ish) life. 

So if anyone wants to join me for ChelanMan (you've got several months to decide) please please think about it. Let's get nuts. Let's get silly and have some fun and sweat, and laugh, and feel alive.

October MRI Results

Of course, of course, of course, the day I go to get my MRI results, I have a seizure. (I was at 4.5 months seizure free. DAMN IT.) In fact, not to be outdone, I had two in quite close succession (a window of about 60 minutes. And it took forever to come back down from that short circuit. So stupid. It was humiliating, too. I was in the shower, and started feeling "off". I got out but was confused. I was walking back and forth in the house trying to figure out what what happening, all the while, curtains are peeled back throughout the house and I'm a drenched cat, totally naked. I couldn't think to dry off. Or manually get clothes on. Hopefully I didn't terrify pedestrians walking by. In those moments it's too difficult to even function. And the more you do the more it spurs increasingly aggressive seizures. So I made my way to the bedroom snatched a phone and hit redial. Lucky my mom answered. All I could say was, "mom, I am alone. I'm having a seizure. It's worse than normal. It's going to get bad. I may lose consciousness. Please call Dan to come home." Then I hung up. Once in bed I couldn't move, I was paralyzed. I couldn't feel my right side, then came the painful throbbing. It started in my right arm, and spread up to the brain, then it flushed out from my right hip until my whole pelvis was throbbing in pain. I had never had effects on my pelvis, so that's a new seizure detail. I also don't think I've ever had two seizures in one day. Not a record I wanted to break.

I still made it to the hospital this evening - just before they closed - with Dan's help, to get the radiology report. I had to.

Here it is:

Findings:

There has been prior left frontoparietal crainiotomy for tumor resection. A rim enhancing collection is again seen adjacent to the resection site. On today's study this measures approximately 4.1 x 1.2 cm. This is stable in size compared to previous. No new areas of enhancement are seen. There is unchanged surrounding FLAIR signal abnormality which extends to the ventrical margin.

The midline structures are central and the ventricles are stable in size with minimal ex vacuo dilation.

Impression:

Stable resection cavity and surrounding FLAIR signal when compared to multiple studies. No new enhancement is identified. 

It all looks pretty good to us, but of course we need the final analysis from Dr Linda Liau's tumor board at UCLA.

I would prefer that they didn't have anything on the report to measure (ex: 4.1 x 1.2 cm). But hopefully it's just innocuous. 

For now. I must rest for the remainder of the week. I am going on total and complete hibernation. 

We'll see how that goes. ;)

For tonight, we toast to more good health, to miracles, and hard work, and smiling, and laughter! It all seems to be working pretty well. 

Life On My Terms

I had an epiphany last night. It was profound, and yet seems so simple, so clear. I feel like that's the story of my life. My mantra should be, "Look again, there's probably something obvious that will make you feel better."

To preface, I have to explain that I don't sleep well. Actually, I'm a horrible sleeper, one of the worst. Always have been, but of course now post diagnosis it's worse. If Kevin Hart was judging me, instead of Dancing With The Stars, he would give me a 2 out of 10 (and we all know how easy he scores). Most nights I start to fall asleep, and just as I'm on the cusp of slumber, my right hand goes numb, or tingles, or perhaps it's my right leg, and I snap out of bed afraid I'm about to have a seizure. Naturally, this is not conducive for sleeping. The other day, I shared how afraid I've been about my upcoming MRI. And how much I hate that. I hate being afraid. But what occurred to me last night is that my deep fear isn't the MRI, but what the MRI could set into motion, like another brain surgery, or radiation or chemo. But, while I analyzed those fears I thought to myself, I've already gone against doctor's wishes, and it has proved to be better for me, both mentally, physically, and even longevity wise. That I have been rogue for a few years with my treatments, and instead of being afraid of what doctors could tell me to do, I've done what I want, even though their words hovered, and have permeated my psyche instilling fear. But you know what? I'm the only one who can control the thoughts in my brain. I choose to allow fear in, therefore, I can also remove the triggers that instil the fear.

This cancer will be on my terms. I will no longer have that deep rooted fear because I will know that I will only do what I want. I will not be pressured out of fear. I will do standard treatments if that's what feels right. But if it doesn't then I won't. I'll cross that bridge when I get there. This is my life, my one shot. I don't want to regret a thing. And if that means I die young, then that's what it means. Truthfully, if I am going to die young, then it was probably going to happen anyway. But it will be my journey, and I will be true to myself.

Man it's a relief to realize the power I have. But, that power will be diminished if I stray from my heart. We all have our own paths to take, but we also have to blaze alone.

I mean, what is the purpose of this life? Could it be to remain true to yourself? Can that really be summarized in a one-liner? I don't think so. Life is vast, and minute, full of variables, and surprises, and gifts, and challenges. I don't have the answers, but I do know that when I finally fell into a deep sleep, lips upturned in a subtle smile, it was from the rolling thought of, Thank you for this life. Thank you. Thank you. Thank you. Thank you. Thank you.....

This morning, born out of the ashes of my new found strength, I made the most delicious smoothie in the history of Jess smoothies! I even made some smoothie friends.

Matcha Latte
1 tsp ceremonial matcha
warm/hot unsweetened almond milk (enough to fill the cup)

Fill the mug 1/4 full with the warm/hot milk, add the matcha, whisk vigorously. Once it looks nice and creamy, fill the rest of the mug with milk and do a final whisk or two.

Apple Cider Vinegar Aperitif 
1 tbsp ACV (with mother)
filtered room temp water

This one's pretty self explanatory.

Spicy Salty Sweet Green Smoothie
coconut water (add as you blend to the consistency you desire)
1/2 cucumber (with peel)
1/2 jalapeno
1/2 green apple
1/4 lime (skin and all)
1 large handful of spinach
2 leaves lacinato kale
2 inches of ginger (peeled)
2 tbsp fish oil

Blend it all together until it's creamy (it's the fish oil that gives the great consistency, but you can substitute flax seed oil, or coconut oil if you prefer, it may change the taste a little though). This batch fills two glasses.

Venom-ing All Over Town

Sorry I'm not posting much these days. I can't seem to get my thoughts together, which sucks because I have so many stories. It's times like this that I can't help but be afraid that the tumor is growing back. I can't remember even basic things, let alone important details. It's ridiculously scary. I realize that stress messes with the mind, and I've been doing a lot since Moab, in fact just a couple of days after I got back I flew to NYC for my most recent immunotherapy shot (it was so fun to see you Nate, Miriam, Sol & Larry!!) - but still, it feels different. But maybe it always does.

I talked to my dad the other morning (maybe it was even yesterday - it's all such a blur) and we started the process of scheduling my next MRI which, once approved, should fall on October 25th. I had a total and complete breakdown just scheduling the scan. I'm so scared. And I hate that I'm scared. So I did the only thing I thought to do, I reached out to my FD campers, knowing they would understand. And within moments I was surrounded by love and support. They get it. They know that fear intimately, an ominous cloud, the Grim Reaper hidden in its' dark folds, red eyes glowing.

My brain may be fuzzy, tired, not-connecting, sad, scared, out-of-wack, but I made a deal with my friend "Crush" (Katie) that I was going to make it to the gym every day, Monday through Friday, from now until the MRI. I only have to be there for five minutes (although so far I've blown that out of the water). It's a trick to get me moving, to distract me. A rule to get me out of the house, and out of my situation.

I used to just chill at home most of the time because of the venom, and its' applications (gotta refrigerate, have to find a spot to lay down, etc.), but when I was with First Descents, on our final long three pitch climb, our FD Instructor/Camp Facilitator/Friend "Honey Bucket" climbed up the mountain with my venom strapped to her back so that I didn't have to sit below in the car by myself. It was profound. It changed me. Somehow it had escaped me that I could stuff a cooler into a big pack and go. To get nuts and live; to live like a normal person, not a hermit. (Sorry hermits, I still love you.) So I've been off on park benches, on rocks, on anything that will sustain me, dropping chlorotoxin into my nose. I've grown thicker skin, ignoring the stares, the odd looks, the whispers.

Honey Bucket with venom in tow

Venom-ing at JFK by myself (super tricky photo op)

Venom-ing on top of Mt Si

Venom-ing on a walk with Dan

So, again, I'm sorry that I'm finding it hard to think straight, that it's hard for me to formulate blog posts, but I'm sure you understand, and I appreciate the compassion. For my sanity, I must get out of the house and move my body, or it feels like I will evaporate, or disintegrate, or spontaneously combust, leaving only fingernails and hair in my wake. (I don't know why the hair and nails would remain, it's just a hunch.) Off to bed. With love, Jess

New Blog Page

Hey Guys, I've been working on this page for a bit. I'm trying to make it easier for tumor fighters to navigate my blog, and the tumor world. I'm pulling essential information to the front page of the blog so that newly diagnosed/newly recurrent tumor fighters don't have to sift through all of the posts to get pointers. I've copied and pasted my list below. If any of you tumor fighters (or anyone in general) have suggestions, I would really appreciate it. I know that I wish I would have had this information when I was originally diagnosed, it would have saved me a lot of trouble, headache, and disappointment. That's what I'm trying to prevent for others.

What to Know About Brain Surgeries

This is a list-in-progress of things I've learned throughout the past few years of fighting brain tumors (feel free to add suggestions in the comments section):

• You want a neurosurgeon/oncologist that is incredibly familiar with your specific diagnosis (subtype of tumor, molecular abnormalities, etc.). 
• You want a neurosurgeon that performs 300+ brain tumor resections a year.
• You want a neurosurgeon that is actively involved in clinical trials for your specific diagnosis/pathology. 
• Don't be afraid to email doctors, or tumor fighters with websites/blogs to ask questions. Especially if you find a promising clinical trial, look for the lead doctor's name and seek them out and ask questions. Doctors that are conducting clinical trials are very passionate about their work and are happy to help.
• After your initial MRI (with diagnosis) but before your surgery, your doctors should require a fMRI to make sure that your tumor isn't located in a delicate area of your brain.
• What is a fMRI? Click for information.
• If your tumor is located in a tricky area, the doctors may request a partially awake surgery to keep your healthy brain in tact
• What is a Partially Awake Craniotomy? Click for information. It sounds scary, but you don't want to lose any of your healthy brain, because once it's removed you can't get it back. Depending on where your tumor is growing, if your neurosurgeon doesn't map out your brain, and do an awake surgery when needed, they can cause severe damage to your language areas, your movement, heck, it could really damage you for life.
• If you have a low grade glioma, or doctors aren't sure, they should request a F-FDOPA PET scan to determine the mass. F-FDOPA PET scans are only available at top brain tumor centers. If you ask for a F-FDOPA PET scan and your doctors aren't familiar, or if they don't have the capability, ask for a referral to a center that does. You may have to travel for it, but trust me, this is your brain. It's worth it. This is especially important for recurrent low grade gliomas. A F-FDOPA PET scan can determine whether an area on a MRI is showing scar tissue, necrosis, or if it is active tumor growth. That is imperative when doctors are wanting to do another brain surgery, or are pushing for treatments like radiation or chemotherapy. You want to make sure that you truly have a tumor growing in your head before you damage your body. I have heard of patients going in for a second brain tumor resection only to find out after the fact that the image on the MRI had only been scar tissue.
• What is a F-FDOPA PET? Click for information. ("F-FDOPA activity may identify tumor not visible on MRI")
• Before you go in for surgery ask for your tumor tissue to be flash frozen instead of being put in the standard paraffin wax. That will allow your tissue to remain viable for immunotherapy treatments in the future. Also, ask that they don't use your tissue for testing, that it remain in tact.
• What is tissue banking? Click for information. 
• My most recent tumor is being banked at UCLA. It was flash frozen. It's a miniscule amount (0.17 grams compared to the 2 grams necessary for a DCVax vaccine), but as science progresses less and less tissue will be necessary for personalized tumor vaccines. A little bit is better than none. And if your tissue is stored in paraffin wax, which is the industry standard, it is useless for immunotherapies. 

Okay, that's all I can think of for now. Please leave comments with the things I've forgotten, I appreciate the help. This list is for the sole purpose of helping other brain tumor fighters. We're a small group, and I know that I've learned a lot from my peers.

Invisibly Expensive

I'm feeling so grateful to be alive today. For some unknown reason, the sentiment is stronger than usual. It's palpable. It feels good!

I feel like one of the luckiest girls in the world. To have grown up on one of the most beautiful islands on the planet, to wander down to our pond with Kaal watching tadpoles morph into frogs, to collect beach glass on sunny days walking along South Beach. To be influenced by the gracious and reprimanding adults of the community that helped mold me. To learn from teachers who watched me grow from the time I was a toddler, pushing me to always challenge myself, to never settle. To get to experience Costa Rica as an exchange student in high school; realizing how amazingly different cultures are, yet noticing the similarities of human nature. That I was able to travel to Texas for college, experiencing the unique world of Southern Charm. That in my late 20's I was able to explore Thailand with only a backpack strapped over my shoulders. That I was nurtured by Friday Harbor and West Seattle friends who happened to live there, softening the blow of fear as I traveled alone. I was able to analyze who I was, who I wanted to be, what I believed in, and I spent a lot of time questioning the purpose of life. It was a time of epiphanies, of self growth. Then came deep love. True love. The partnering with my soul's mate. Which too soon, came the headache, the demanding of a MRI, and ultimately the moment that turned our lives upside down. That I survived the first tumor resection, then almost died from the blood clot in the tumor cavity. That I learned how to speak again, and read, and write, and walk, then run. That I have survived a second brain tumor, and now I'm fortunate enough to travel for medical care. That I am here, that I'm able to fight for my health. That I currently am without a tumor mass in my brain. It's amazing!  

Last night my buddy Jess and I were laughing about my body. We laughed because Dan and I may not have fancy things, or expensive cars. We don't own a house, or have any assets. Instead, last year alone, we had just shy of $90,000 of medical deductions for our taxes. And that's only the amount that the government recognizes as tax deductable, we had more that we could not write-off. Essentially, in one year, my body cost us over $100,000. It's weird, I'm not draped in name brands, or fancy jewelry, but I probably cost more than 90% of the outfits walking around even the most expensive stores. I am invisibly expensive. Like a diamond in the rough. 

It's humorous, the expense of my body, but at the same time it's kind of sad. I wish Dan didn't have to spend every extra dollar on my health. I wish he could fix up his car, or have a vacation that wasn't centered around a medical shot, or Dopa PET scan. I wish I could give him the wedding he deserves, or shoot, just provide the honeymoon (hubba, hubba). But we will never spend the money. We can't. 

I am deeply happy to be alive, to be able to walk outside and brush my fingertips across our beautiful blue hydreangeas, or kneel down to trace the back of my had across our soft lambs ears (yes, yes I know, technically they're weeds, but the bees and butterflies love them so much). I'm am immensely grateful to be alive, and when I feel disappointed by the inevitable burden that is placed on Danny and my parents (who provide the venom and help with the cherry sales and many things during surgery times and so much of my emotional support), I try to remind myself that we can always get 'things' later. That life won't wait. That my medical care isn't an option. We work so hard to get to the place that most people take for granted. It's not their fault, it's human nature. Young people aren't supposed to get sick. We're supposed to hearty, and healthy and invincible.  

When I feel sad about the things that Dan doesn't get to do, or how his life is changed by my health, I try and picture myself on the west side of the island being whipped by the salty air, or I anticipate the sweet scent of native blackberries that will permeate the air very soon. I just change the subject, and hope that my health will continue so that burden of me, and my care, will lessen. That someday we will be more normal. To not have such financial demands. That I will be able to someday fulfill Dan and my dream of owning a home, and for me to bear him children. It's scary to dream, especially in a world like ours that is so fluid, and unstable, but if you aren't dreaming, then you aren't living. And if you aren't living, you're just not dying.

Here's a delicious drink I created yesterday on my quest to survive this Seattle heat spell. My favorite part is the froth on the top, but if you don't like that just give it a quick swirl with a spoon before you poor. This is not a smoothie, it's light, and meant to be poored over ice.

Kale Cooler

1 liter coconut water 

1/2 cucumber (with peel)

5 large kale leaves (stems removed)

1 celery heart & leaves (I eat a lot of celery as snacks so I keep the hearts and leaves for my smoothies.)

1/3-1/4 cup mint (stems removed)

1-2 inches of ginger root (peeled)

Here's the nutritional information for the whole pitcher: 

The total calories for the entire pitcher: 348. You can add extra water to dilute and the concoction will go even further. I like to drink a full, regular glass, then I keep filling the cup with water because it retains some of the green goodness as flavor.

Don't just not die. Do something that makes you feel alive today. 

Orthoexia? What!

Holy. Cow. I have borderline orthorexia. 

It's an actual thing. 

I was watching the news this morning and a story came on about a girl who went vegan and about a year into it she realized that she would stand in front of the fridge for 20 minutes, overanalyzing her food choices, afraid to make a decision. She was obsessed with picking the healthiest choice (the definition of orthorexia). Hearing her story was like looking into the mirror. The girl became malnourished, having an extreme case of the disorder. I would consider myself more borderline, but the truth is, my obsession with food has lead me to become weak, have more seizures, limited my activities, and has isolated me from social settings. It has been too much. My relationship with food has become unhealthy. 

The tricky part, is that in the case of cancer many people say that their extreme food choices (orthorexia) saved their life. That it stopped their tumor growth, or even healed them. Of course, as with everything, there's a fine line, but I'm realizing for me personally, I've crossed it. Analyzing food has been all encompassing. Food has come to signify life or death. It has become my god and my devil. 

This realization, of orthorexia, comes just several days after making the choice to stop being so restrictive. I have stopped checking macronutrients (even though I can mentally size up grams, and ounces, and calories, and fat content and carb amounts of various foods - vegetables, fruits, meats, dairy items, oils, nuts - by memory) I no longer eliminate things from my diet. I made that decision after observing the fact that my seizures have gotten worse the more I restrict, the more I obsess and remove foods from my diet.

I should say, I can't, nor would I want to, unknow what I know about food. I'm now allowing myself to use my vast knowledge (and part of this is me acknowledging that I am educated enough to make great decisions) to eat the way that I need to for energy, for seizure control, and for tumor-fighting. Every body is unique. Each body has specific needs, and now that I've tried everyone else's protocols, I need to just create my own. I finally feel comfortable enough, after trying every tumor diet I could find, to fly on my own. Now I'm truly off in unchartered territory. My own rules. My own way. I feel empowered, but nervous. My training wheels are off. 

I have always put so much weight on food choices, since I was diagnosed, then progressively so as I researched more and more. Now it's up to me to make the best decisions. To compile all of my reading, my knowledge, and live healthy, to fight my tumor, and eliminate seizures, and have enough energy to get out and enjoy life. I hope I'm making the correct decision. I guess we'll find out in October when I have my next MRI. Perhaps, I just need to have faith in myself. And remind myself that no one diet (vegan, raw, restricted ketogenic, paleo, vegetarian, Budwigs, macrobiotic...etc.) cures cancer. But a percentage of people do well on each one. I need to go back to listening to my body, and quit beating my head against the brick wall of food/diet. 

I leave you with a photo of Charlie, my largest, happiest, cucumber plant. Note to self: I should probably stop naming my plants because it makes it harder to eat them.