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!! 

Poof.

My friends keep dying.

Smattered between the 50% off holiday spam emails, are updates from caregivers telling me about loss after loss. Then the upside, the lucky ones if you can call us that, they're coming to me with notices of recurrences, and declines, and paralyzations, and sadness. It's surgeries, and radiation, with chemo complaints. It's all heavy. It's always heavy.

So much sadness.

I am not a timely communicator anymore. I've come to dread my phone, and my computer. I hesitate to connect. I'm a conduit for information, this blog, but it's not without an obvious toll.

Thank you for being patient with my lack of responses to emails, to texts, and unfortunately, I don't see an improvement in my behavior, for clear reasons. I don't want to get swallowed by the sadness, so I must protect myself. That means cutting away on many occasions. Or for long periods of time. And it often means everyone, not just cancer related.

I was blindsided by this diagnosis, and have managed because I've methodically taken one step after the other. I have no idea what I'm doing. I'm just doing the best that I can, in the situation I'm in. I have zero capability to disconnect, or compartmentalize. I just don't have that talent. And for a girl lacking in the department, this muddled, cancer vortex, can completely disintegrate the heart at the soul of the girl.

I want to know what's going on with my friends, I want to fix it all, I want the hurt to go away for everyone. But's not fixable. Not by my hands. So, instead, I grieve like they do, and wish things were different.

Just after Christmas, my longest running brain tumor friend passed away. She and I had the same diagnosis. Even a very similar pathology. The difference? The location of the tumor. I had no idea she was dangerously close to death. And that's what it is in my world. One minute they're here, and the next they're gone. Poof. We're a highly vulnerable bunch.

My friend's lives are sifting through the slats of my fingertips.

I don't write much these days because it would be much the same thing. If I write, I feel, and sometimes, the only thing I want to feel is my love for Dan. And I cling to it tightly. He's my safe place, my lair, my battery charger; my blanket, and my umbrella. He's the halls that reverberate my laughter.

To all of you, to those who will read this, and for those who might not, I love you all. I think about everyone often, I pray for people, and send them love from my heart to theirs. I might not call or text much, or respond even, to your messages, but I love you no less. I'm just doing the best that I can.

So I'll have a good cry for M, and then I will wash my face, put on some layers, and walk that last Christmas gift down to the post office for a tardy mail.

I'm not sure when I'll write again. (Thank you for understanding.)

With love,
Jess

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 Tumor Board Update

Friday Friday Friday. No results from the tumor board yet. I'm excited for a few days to pretend everything's normal, Dan's still on the fence about it being a good thing. Bet I can tease a toothy smile out of him yet, though!

A photo posted by @jessica_oldwyn on Oct 21, 2016 at 6:13pm PDT

Half of the MRI Results (Swedish vs UCLA)

Basic update about our current and upcoming results for treatment.

Introduction to My YouTube Vlog

I'm getting lazy in my old age, and resorting to video blogs to keep in touch.

Okay, I was just cracking a joke, but truth is, I'm having a harder and harder time expressing myself with written words. I can't even think straight these days. I'm truly bone tired, and that's why I barely write anymore.

Please note: My YouTube channel will have all the videos, but the BLOG will have all the various posts: video, written, guest, etc.

Bus Bacteria Bad. Brain Bacteria Good.

Hey Guys,

What is it about summer that causes it to go faster, and faster, and faster, until you lose your mind? Or get sick. I get sick every few years, and never in the summer, but lucky me, that's exactly what just happened. I must have licked my fingers after touching things on the city bus or something. (Gross!) But life doesn't stop when you get sick - kinda like cancer.

I'm busy with gloriously fun things like promoting the MLD docu-series with interviews, corresponding with tumor patients/caregivers, and visiting with out-of-town friends, all peppered with doctor appointments.

I'm not sleeping well because of headaches, which is a constant reminder of the fact that my brain tumor is growing again. I'm fine during the day, I'm so busy that I can't even keep up, but at night, as soon as I'm vertical, the pressure in my head grows intense. It's come to the point where I am back to relying on headache medicine. I hate having to do that. I'm grateful that my seizures have remained stable, though, which feels like a Christmas miracle.

I like to think that the headaches are because I'm doing too much, trying to conquer too many things, maybe I'm not organized enough, anything but the mass of rogue cells multiplying in the folds of my brain.

Last weekend I turned 36, and although birthday goals are a newer thing for me, I have it in my head that I want to live past age 40, and not be sporting a wheelchair/walker while I enjoy my cake (although decorating those items sound kind of awesome). That fear is based off of my horrible luck with brain surgeries. Granted the most recent one healed pretty well, but man if that second brain surgery didn't give me a run for my money.

Good God, I'm in a morbid mood. Must be the fever.

That doesn't mean I don't want to live a long life - obviously I do - I just want to make baby goals, which feel sustainable.

A famous Bonnie Birthday cake. Delish!

I'm scared for this next brain surgery, and unsure if I will do it at UCLA like my previous one. If I have to endure a 4th brain surgery, I want to make it count. Originally, the back-to-back brain surgeries in 2010 were at University of Washington in Seattle, then I wanted to do the clinical trial using dendtric cell therapy for diffuse astrocytoma which was at UCLA, so I headed down there. You may remember that after the surgery, I was told my tumor didn't meet the parameters of the trial (my tumor tissue was too integrated with healthy tissue). That forced me to Germany trying to get my own dendritic cell therapy. There aren't many clinical trials for my type of tumor, or grade, so we are forced to get worse before we can hope to get better. That's the system that I'm in. It sucks. So I need to continue my search for possible brain surgeons that are offering more than just a surgery. I want try something innovative, something more. I'm not sure if I'll find anything, but I kind of want someone to put bacteria in my brain.

Okay, I still have two more phone meetings tonight and I lost my voice, so before I lose all ability to think I'd better wrap this up. I do have more exciting news, though. Danny and I are being flown down to LA next week for the premier, and a showing of My Last Days. We get to go see everyone who filmed, and meet the rest of the folks that were featured. I can't wait! I mean, I can wait because I want to be healthy. Otherwise I might have to show up in a bubble so that I don't infect anyone. I will now power down my brain for a quick quiet moment. Sending everyone love, and thank you as always for loving and supporting us!

Abbreviated 18f-DOPA PET Results

It's a long story, and I'm pretty pooped, but here's a basic overview. The "scan was concerning for active disease". It really isn't the biggest deal, it could have quadrupled in size. There's still questions surrounding imaging possibly being effected by treatments - not likely, but I won't rule it out, I'm always hopeful. We're trying to decide what our next step is (stopping treatment, skipping treatment, adding treatment, etc.). I'm surprisingly pleased with the results. It's not the best news. As our neurosurgeon says, "It's trending toward recurrence"(there are two "nodules" they're watching). She wanted surgery, but we asked for a little more time. I'm not ready for the risk. I'm too scared. If the area is worse in October, we will revisit our options which include the usual suspects: surgery, radiation, chemo, or a combination.

Apparently even my happy kitty socks couldn't save the day, but they made me and my TSA pat down lady happy, so there's that. Sorry that I won't be letting people know individually, but as you can imagine, it's overwhelming to reach out to all you lovely friends, I'd be on my phone for hours. I'm hoping to give a better explanation about the situation in the coming days.

UW Results

As always, we have to confirm with UCLA, but the preliminary findings of my MRI is stable. The FLAIR signal in the tumor cavity is slightly increased. However there is no enhancement, and no new nodular area. There's a venus abnormality that they've been watching, but I'm not too concerned about it.

All-in-all a great scan. I had been terrified, even convinced that there would be a new lesion, since I've been eating horribly, including a 20 lb weight gain - pure sugar. I've always equated excess calories as food for the tumor so the fact that there isn't obvious tumor growth is a freaking miracle. Apparently diet isn't the end-all-be-all of cancer growth. (I'm sure it matters, but who knows how much, and for which cancers, and which people?)

I'm obviously relieved, and can now focus on treating myself well because I want to. I can exercise, and eat right, because it's fun, not because I'm scared and feel responsible. I had been punishing myself, even daring the cancer to come back and prove me right. I know that sounds disgusting, and selfish. I felt that when I get good results, when I succeed, I still watch my friends get sicker. So if I have a good scan, I lose. And if I have a bad scan, I lose. I lose either way. I feel guilty being "heathy", even though cancer has taken so much from me. From us. 

It's really hard to be fearless in this situation, and very hard to not get stuck. It's time for me to stop punishing myself for success, for my good fortune and hard work. I don't know how to manifest that, to forgive myself for being alive, for being able to mow the lawn just now. That guilt has no place, I realize it, but it's there nonetheless. 

On Wednesday, through the help of a girlfriend, I was able to take my nephew KC to We Day (http://www.weday.com) where I watched thousands of seventh grade world changers. The kids are fearless, they're kind, they're big thinkers and problem solvers. I'm going to try to harness their spirit and attitude to get outside of myself. When I get in a rut, when I feel paralyzed, I need to remind myself to find inspiration. It always helps. For being an extrovert, I can certainly disappear from friends, from family, I can get scared, and filled with denial and avoidance, and that's fine from time to time, but if we don't look out, and see what's around us, who needs help, how you can have a positive impact on those around you, then what's the point. 

I'm just really relieved about this first set of results, and grateful that I didn't shoot myself in the foot with diet and lifestyle choices. One of the saddest things that we can do in life is give up, or take our health for granted. I'm embarrassed to say that I feel like I kind of had. But not any longer. There's probably a fine line  between giving up and enjoying yourself, and one of these days I'm sure I'll figure it out.

No Model

A couple of months ago a patient told me that I'm a role model, and it completely freaked me out. That is a ton of responsibility. I don't want to model anything other than my own behavior. How can I be a model for others, what if I have a recurrence? Will patients think they're going to die too? That we're all doomed? That's how I feel sometimes when tumor friends have recurrences. I don't want that on my hands. What if I just want to eat crap for a year and see what happens? You can't do that if you're a role model. When you're a role model you're held to a higher standard; there's good behaviors that you're supposed to exhibit. You're supposed to lead by example. That's a lot of responsibility, and it's definitely too much stress. I'm not trying to be perfect, I'm just trying to be me. And sometimes that means mimosas and scones. And what brain tumor role model would encourage that? (Sugar on sugar on alcohol?!) A naughty one. One that shouldn't be looked up to. 

A couple of days ago I removed my favorite Buddhist saying and replaced it with this.
I like to think I made it up, but probably not.

Last night, a friend helped me see that I am not other people's stories. That when I help, I don't have to own what people are going through. I can assist in a time of need, hold their hand in a moment, but allow and encourage people to continue on without me. It feels a little bit like accelerated parenting. Help people find their wings by connecting them to other people and ideas and resources. It's easier said than done, but it's a lesson we all have to learn. In life, we connect, even if we don't want to. There's these invisible strings that pull us together spiritually, emotionally, physically, and if you're dealing with heavy stories all the time, you can become tangled. Tied up. And that's where I was, in a balled up mess, until she helped me break loose. 

Someone asked me last summer, "What gifts has cancer given you?" And at first I wanted to blurt out, "A horrible case of paranoia." But then in an epiphany, I saw a slideshow of faces, of all the interesting, caring, brilliant people I've met because of my diagnosis. Many of the people, most actually, who read the blog, don't comment. They're private, but they can somehow relate to what I'm feeling, to what I'm going through. Some have had cancer, others are currently undergoing treatment, and most are healthy, but what I write has struck a chord in them. The biggest shame, is that there are exponentially more people who read this blog than engage. I wish people felt comfortable, and it's my fault for not facilitating it, to comment more, to create dialog not just toward me in private emails, but amongst each other. Maybe people don't realize it's easy to post anonymously, or use a pseudonym. 

I feel strongly that we have to be the change we want to see. And sometimes, eliciting that change is just talking. It's getting the information out there. It's discussion. It's provoking thought. We learn invaluable information from others, and I can't express enough the powerful conversations that I've had between patients. They have altered my view on various things, and helped me evolve. But the conversations are private, and I'm not at liberty to share. If only people could open up, even anonymously, we could all benefit. There have been many times that I stopped writing because I thought that my story, my thoughts, my experiences, held no value, so I didn't bother, only to find in private conversations with friends, that my views and stories helped them. So the next time you think you don't have anything to contribute, please think again. Sometimes it's not what you bring to the table, it's the responses that are elicited and the trajectory of problem solving, of piecing things together, with multiple minds, that blow us away. The most beautiful thing would be for readers of the blog to begin dialog even with each other. I field so many email questions, but what if a person chose to post a question in the comments, they could do it anonymously, and just see what people suggest for solutions, or just share their knowledge. The more we talk, the more questions will come up, the more problems we could address, the more we could educate ourselves.

I have grown by sharing my story. It has made me a better person. I took a hiatus because I became overwhelmed, but with the right tools, by setting some boundaries, I think I can continue, and be better for it. It sucks, but no one is going to set your limits, you have to do it yourself. Kinda like the dishes. Okay, that was dumb. But, you know what I mean. I could have shriveled away from the blog, and in essence, I did, but it would be a shame for me to lose the magic. It has brought me so much joy, revolutionized my damaged brain, given me hope, and love, and friendship.

Thank you for giving me space, and also encouragement while I was away. The most powerful thing I've heard lately, was, "Your story is enough." I never feel like I do enough, and to be given permission to own that as a fact - that I am enough - was powerful. I'm absorbing it. I hope you can except it for you too.

Brain Tumor Movie: Volunteers

Many of you get the Musella Foundation newsletter in your email inbox, but for those of you who aren't familiar you'll find a link on my resources page with an explanation. (Or use the link here: http://www.virtualtrials.com)

In the most recent blast, there was a film group looking for newly diagnosed brain tumor patients who would be willing to be filmed for a year or two to document their journey. They're also looking for "survivors" (I'm so sick of that term), that can help share their tricks, and experiences, to provide hope, and perhaps even direction.




I'm not going to apply, I'm already overwhelmed with all of the tumor patients that I help on a daily basis. I realized the other day, I've been trying to help everyone else, putting myself last. I love helping people, I want to make life easier for them, I want to save them. I want to make it so that their diagnosis never happened. But it is at the expense of my health. I stop doing things to make myself healthy, to make myself feel good. I get depressed by all of these serious, heartbreaking stories. I'm not cut out to handle all of this sadness, all of this stress. It's caused me to emotionally eat, I've gained weight, I'm not focusing on what's best for my body - barely exercising. There's too much stress. Imagine, that not only are you dealing with your own diagnosis, but you handle tens of others. And people don't come to me when things are good, they come to me at their worst (their mom, their daughter, their son, their father, their wife, their husband) are just diagnosed, or they're in the midst of a recurrence. They're terrified, and confused. I handle around 20-50 emails from patients a day, not including many texts, and phone calls. And as you know, the subject matter is heavy as shit. (Not literally - that's gross.)

People never realize how many patients I work with because the job is invisible. And that's fine, but when people reach out to me with questions that they can answer themselves with a quick Google search, it really piles up, and more so, it irritates me. I'm realizing that my time is valuable. That it's okay to redirect people to go do their own research, but it's hard to turn people away. I never feel right about it, but people have to be able to help themselves.

I wake up in the middle of the night thinking about patient cases - both the people I redirect, and the others that I work with as peers. There are many who work with me troubleshooting their cases and we learn together. And those relationships are healing and exciting, but those cases are quite rare. As patients we have to turn on our critical thinking. We need to find our True North. I can't provide that to you. The problem is that I'm scared for everybody, and I'm overwhelmed. I never anticipated that this blog would be such a widely used resource. It's an honor, and I'm flattered, but I didn't factor the issue of growth. I can not take on more patients, but I'm happy to answer questions about my doctors, and some of the treatments, I just need people to do their homework first. Please don't come to me with things that you could easily figure out yourself. Because of that issue, I removed my email address from the blog. If you need to get in contact with me, please comment anywhere on the blog, any post, any page. I added a tab up at the top to help people utilize my blog, how to search it for the information they're looking for (Contact Me). I'm in the process of seriously updating my Resources tab so that it's easy to understand, with images, explanations, and links. I want to do it all, help everyone, but I am hurting myself. I handle tumor correspondence from the time I wake up to the time I go to bed. I handle patient problems all weekend, it's non-stop. There are so many problems with that, but mostly, it's not fair to Dan. He never complains, but I love him so much and for the past several years, he has not come first, the brain tumor patients have.

I'm sorry I can't do more. I feel horrible about this. 

Last Chance

What if today was your last chance? That's the question I ruminated over on the 31st, as I ran a last minute, last chance, half marathon with my buddy Jules. I hadn't trained, but you guys know me - I'm always up for a challenge, and I'm not great at longterm planning. Jules had come up with an idea, a dare if you will, to run a half marathon every month for 2016. But of course, 12 half marathons in 12 months wasn't enough, we had to do a pre-half marathon, a literal last minute half marathon on the final day of 2015.

My longest run in the past year has been around 3 miles. A half marathon is 13.1 miles. A gross difference.

With my track record of race mishaps, this one was no exception. In fact, if I made New Year resolutions, it would be to pay closer attention at races. So, of course Jules and I needed to use the bathroom before we took off for the race, so as others were stretching, jogging in place, and getting ready for the start, we trailed the end of the bathroom line. As the line was halfway through, the race started. By the time we made it out of the stalls, everyone had taken off. So when we started running, we didn't know which direction to head. My instincts in these races are solid 100% off, knowing that, you can guess that we ran in exactly the opposite direction of the path. By the time we figured out where to go and redirected, we were 15-20 minutes late from the starting gun.

It was 21 degrees, and icy in Bellingham, and I hadn't been running outside at all, but the second my legs started moving, I was bouncing and excited. There's this thrilling feeling I get when I run, especially when I'm in a competition. And what I learned is that the best place to start a race is from behind because you never get passed.

While I ran for that 2.5 hours (or 2.3 if you deduct our bathroom and detour incident) I had plenty of time to look out at the beauty that is the PNW. I also had plenty of time to think about my life, my health, my love for Dan, my love for my family, and friends, and the gratitude I have to be here on Earth, spending time learning, and laughing, and exploring. I know that sounds cheesy, I mean it IS cheesy, but it's also truth. Reflection is a powerful, helpful guide that reminds me of all the interesting things I've been able to accomplish, the trials I've gone through, and how fortunate I am to be in the state that I am in now. Sometimes I forget how healthy I am because I get scared by the ins and outs of treatments, of the routine MRIs - the reality of the state that I live in. I'm always trying to be present, but in each moment I feel the weight of a lead shoe waiting to drop. I know it can change in an instant, and that there is a big old blob in my brain that doctors expect will kill me.

As I ran, I kept thinking about what if this was my last day on Earth, what if this was the last time I could run, what if this was the last year of my life, what if this was the last time [fill in the blank]. Would I do anything different? Just the title of the race "Last Chance", was tantalizingly provoking. The combination of endorphins and the tease of theory, of philosophy, of desire, and potential loss, washed over me in a deep cleansing.

Since the 31st I have been crippled with soreness, with pain, but it feels glorious to be alive and although I will most certainly be training for the next 12 half marathons of 2016, I will ride that pain to every finish line in honor of my brain tumor comrades who will never have the luxury.

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.

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):

Study of Orally Administered AG-120 in Subjects With Advanced Solid Tumors, Including Glioma, With an IDH1 Mutation

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.

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?

Podcast Interview "Living With..."

I had the honor of being interviewed for the podcast, "Living With..." recently. Here is what this iTunes channel is all about (in Tom's own words): 

Description

Living With… is about those living with cancer and other diseases or challenges. It's a community of inspirational people who got some bad news, were dealt a terrible hand, a horrible diagnosis, which changed their lives forever. I have Myelodysplastic Syndrome (MDS), a progressive bone marrow disease which robs the body of its ability to produce blood cells and fight infection. For some reason the body stops making proper blood cells, leaving the body weak and vulnerable. Treatments include blood transfusions, drugs to boost blood cell production, and ultimately bone marrow transplant. My levels have declined considerably. I take drugs to keep my levels from declining even more, but no one knows how long they will work. I get routine blood tests to monitor my levels. I used to be an avid runner and have run several 5k, 10k, half & full marathons. I suffer from lack of energy and fatigue, but I’m able to work and do most things if I pace myself. Now, I am a walker, but I haven’t given up. I miss running, but I’m alive! The Living With Podcast is my way of bringing you interviews with inspirational people who are living with cancer, illness, and other challenges. I feel we can learn a lot from them, be inspired by them and ultimately live more meaningful and fulfilling lives. I hope you will listen to the podcast and will be entertained and inspired!

Here is my interview: https://itunes.apple.com/us/podcast/living-with...episode-023/id975036684?i=347582559&mt=2

It's a little bit long because, hey, it's me - I was born talking - but you could listen to some, go take care of some stuff, then come back, etc. I had a blast talking with Tom, and it was really fun to listen to his other podcasts and hear other people's stories. It is a privilege to share my story with others. It is a privilege that I am here on this earth. I am humbled that Tom found my story to be one that would be a benefit to the community. 

To The Moon!

Do you guys remember that the year I was diagnosed (2010) I was training for an Olympic Triathlon? Well, obviously that crumbled, but this winter I decided to use my good health to take a tour of not what could have been - but is about to be. I don't know if that makes sense, but what I'm trying to say is that I'm snatching up opportunities to challenge myself; to get back to living the life I was born to enjoy. That includes challenging myself physically like the mad runner that I always was.

One thing that I've learned about myself is that competing, although awesome, isn't as fun unless you don't take yourself too seriously. Wow, how is it that I can speak in double negatives, yet I can never, for the life of me, understand it when others do. (Or maybe that wasn't a double negative. The mystery is on). I digress. So, a year or so ago, someone stole my bike, the bike we would use for speed and comfort. But with friends like ours, it is of no surprise that my buddy Laura lent me her 6 speed beach cruiser to galavant around the hoods of Seattle. She's rusty, but trusty, and when I hit the never expecting bump from our evergreen roots, the bell dings on its' own. I am a sight to see, I'm sure, if not for a lesson in humility.

Next month, I am coming up on the 1500 meter swim (haven't swam since dunking myself in the sound on Saturday and it was a real in and out moment), the 25 mile bike ride (just imagine the cacophony of dings as I race around the course), and the final 10k which is about 10 times longer than I've been running. Not to mention this race is at Lake Chelan where it will easily be 90 degrees by early morning. Dan has gallantly decided to join me, although I don't know how seriously he is planning on taking it. He may leave me in a swirl of bubbles and dust.

From This:

To this:

My Trusty Medicine in The Basket At All Times

On Saturday, Dan trained me down to the farmers market, and back home. Everyone needs a good coach. No joke, my balance is still a bit off from all the brain surgeries, but I'm confident. Dan even made a little video, sneaker that he is, and I can't stop laughing about it. My goal to finish the Olympic Triathlon is to complete in under 3.5 hours. I'm being modest though, I really think I'm going to easily make the three hour mark. (I hope you can literally hear me laughing as I wrote that.) Set the goals high right!? To the moon!

I may not be living the way I thought I would, but good God, I'm having some freaking fun every single day. And I realize that life is more than just having fun, but sometimes it's really exactly what you need.

If you'll be in the Chelan area the race is July 18th, a Saturday. I assume it will be a zoo, but if you're around you'll know me by my uncontrollable dinging, and ahead of its' time aerodynamic helmet. (Sarcasm.)

Does Altruism Exist?

I'm sitting at the JFK waiting to fly back home and wondering to myself how I got so fortunate in life. I just spent the night (as I usually do) with my friends Nate and Miraim, and baby Sol of course, and just being around them is calming, and fun, we talk about everything. It's engaging and energizing, and refreshing, and fills me with joy. Flash to today where Sol, Miriam and I met up with our friend John (Steph was stuck at work) for lunch and again it's the most invigorating, expressive, comprehensive friendship. How did I get so lucky to live this life and be surrounded by such amazing humans? These beautiful souls who think deeply, whose hearts are profoundly touched by human suffering or the human cause. I think they all see themselves as just normal people, but I see them as the glue that keeps humanity real, and kind. I hear their words, as they talk on any subject, and they care. They have such huge hearts, it's the most lovely thing.

The shot went well, fabulously well, Dr Germany said something along the lines of, "We're on a winning team" in reference to my protocol. Man that's a fantastic thing to hear. I don't know why I get to live this - I don't even have a good word for it - blessed life, but I am grateful for every second. And along with living a life that is true to me, and my evolving views, I will also continue my mission to help other tumor patients achieve health, and longevity.

The bandaid peaking out reminds me of today's life giving treatment

The thought has crossed my mind that now I'm stable, I could say screw it and just go live my life (while obviously continuing my treatments). I could stop blogging. I could unconnect from social media and just garden, or find a career that could withstand my seizures, and time off to travel for treatments. I could turn my back on the brain tumor world and focus on anything, or everything, else. I could just spend my time in an unrelated field, or focus on other endeavors, but the truth is that I feel the need to pay it forward. I am driven, compelled, to help others who are just starting their journey, or perhaps are dealing with a relapse/recurrence. I could not turn my back on family, and that's who you all are. You are my brain tumor family, and I will not abandon you. It would be easier, probably, and less emotional, less stressful, but who would I be if I didn't help those in need? It's not the kind of person I want to be. We all have choices every moment of every day about who we are and how we're going to live our lives. I have somehow navigated my way through this crazy diagnosis, and although I'm not guaranteed tumor stability for life, with this path that I'm on, it's working for now and I know I can help others. I've done it and will happily continue. It's actually even selfish sometimes because it makes me feel good when I talk to another brain tumor diagnosees and help them figure out their own plan, because everyone is different. Each brain tumor patient can blaze their own path; they can take little bits here, and little bits there, from other patients who have been successful. When I see, or hear in their voice, the determination to live, it fuels me. When I share what I know, or connect them with others who can also give valuable information, I feel intrinsically good. Is there such a thing as altruism? I really don't know.

So, even though I worry about you guys, all my tumor friends, crying for you at times, I wouldn't change a thing about the responsibility to help. I know this is a choice. I see pieces of myself in you, I know your struggles, I know your fears. Know that I'm here, and I will help you in any way I can.