A New Fund

I can’t believe I’m saying this, but I’ve raised over $7000 from 130 donors since I started fundraising last week. I can’t express the depth of my gratitude for everyone who has helped.

A non-profit called the the Society for Venturism (venturist.org) began raising money on my behalf today. The Venturists have a very good reputation within the cyronics community, and have successfully raised money for cryonics charity cases in the past. I really appreciate all the help I’ve received from the Venturists and the entire cryonics community.

Check out the donation page they set up for me HERE.

If you have paypal account, feel free to donate here.

My treatment has gone well so far, with few side effects other than fatigue. I’ll post a video update about it tomorrow.

Baby’s First Vlog

A lot of people suggested I start a video blog to keep everyone updated on my fundraising efforts. Thanks to everyone who has helped in any way.

If you’d like to help, share this story or donate:

Last Wishes

Hey guys,

Things have changed quite a bit since I’ve last updated. I participated in a phase I clinical trial at Dana-Farber beginning mid-June, though I progressed shortly after the trial began. I’ve decided to do a 5-day round of radiation at Duke; it wont cure me but it might buy me a few months of time. I am still considering trials in the future, but I wanted to act fast as I’m rapidly losing function on my right side (can’t use my arm or hand, can kind of walk with a limp.)

Hopefully you guys don’t think I’m crazy for what I’m about to say, but:

I want to be cryopreserved upon my death. Many of you know that I’m agnostic; I don’t have any clue what happens when you die, but have no reason to think that my consciousness will continue on after death. The only thing that I can think to make me feel a little more at ease with my death is to secure cryopreservation plans on the off-chance that they figure out how to revive people in the future. The way I see it, it’s a better bet than decomposing or getting cremated.

The problem is that don’t have even close to the finances to secure the service. It costs about $30,000-35,000 to coordinate everything through Cryonics Institute (http://www.cryonics.org/) I’ve started a fundraiser and am going look into all outlets to try and help out. I know everyone has already done so much for me; it makes me pretty uncomfortable to ask for more. All I can say is that I’m desperate. I would be endlessly appreciative for anyone that can help, even if it’s just a little.

Here’s a link where you can help with the preservation fund:

Well, here goes. I can’t describe how humbled I am by my friends and family already.

News

About a month ago, I had an MRI that showed a small mass in the left cerebral peduncle of my midbrain (brainstem area). Yesterday I got another MRI that showed that the mass has doubled in size, so we can now confirm that this is recurrent tumor. Because of the fragile nature of the midbrain and brainstem, I probably cannot not have any surgery for this tumor. My clinical trial options are limited, but I am pursuing a few options in hospitals across the country.

A lot of people will tell me not to lose hope, but I think it’s now time for me to truly accept that it’s just about the end for me. For the past month I’ve been living in dread over the results of the MRI; it’s unbearable to wonder constantly whether you have a tumor growing in your head or not. I don’t want to live like that anymore, so I think it’s healthier for me now to let it go. This is not to say that I’m going to stop pushing for the best treatment for my disease, but I need to set my expectations much lower.

There are a few things that could realistically happen:

The best-case scenario is that I enroll in a clinical trial that gives me some more time. The problem here is that most trials don’t have much published data, and I am taking a risk with whatever trial I enroll in.

The standard of care for recurrent brain cancer is Avastin, a drug that limits blood vessel growth in the tumor. This treatment adds about 2 months (median) to survival time, but some patients benefit for longer or don’t benefit at all. Ideally I will get in a clinical trial that combines this treatment with something else.

The worst case scenario is that neither a trial nor Avastin offers me any benefit, and this is a realistic scenario. In this case I probably wont make it more than a couple months, as the brain stem and surrounding areas are important for controlling autonomic bodily functions and motor function. This is the situation I now want to emotionally prepare myself for. I’m asymptomatic right now, but I could begin developing crippling symptoms rapidly. I want to be straightforward with my friends and family about the possibility that I won’t be myself in a month or two.

I plan on updating this more regularly now as I’ll be traveling across the country looking for a clinical trial. I will be starting some type of treatment within the next two weeks. I hope this goes without saying, but I want to thank everyone who has been there for me for the past year or so. I don’t think there’s anything else I can say.

As of 12/23 my scans show no signs of recurrence.

It’s been awhile since I’ve had anything resembling a moment of panic regarding my diagnosis. I don’t cry about it, I don’t get freaked out about it, I don’t obsess over the things I won’t have completed if I am to die soon. I feel like the same person I’ve been for years*, or at least since my last life-changing moment (when I accepted that I just don’t really like Radiohead and I should stop trying).

While I don’t feel like I’ve been in disbelief about my prognosis, I do think the fact that I’ve been nearly symptom free for over 6 months has contributed to a calmer mindset. It’s been long enough that I feel that I’ve accepted that I’ll die young, and the idea doesn’t scare me on a day to day basis. It’s hard to push myself into taking on stricter medicinal or dietary regimens because I’ve resumed living a normal, healthy life and what most people consider minor lifestyle adjustments don’t appear as life-or-death as they perhaps should for someone in my circumstance.

Spending time reading glioblastoma literature tonight has pushed me back into a stage where I feel like shit for not trying harder to improve my survival time. Current GBM treatments are almost definitely not going to cure me of cancer, but some methods could lengthen my life by months or years. The only promise of me ever being “cured” lies in the rate of growth in technology in the medical industry. I think it’s feasible that GBM could be cured in the next 10 years, as phase 1 trials are already pushing the median survival time to 3 times what it is with the standard of care. What I need to be doing more aggressively is trying to live longer – long enough that I could see a long-term survival improvement and potentially a cure.

Anyway, what I’ve decided is that I’m going to stop being a baby about the whole thing and take on a more aggressive approach in my diet (strictly ketogenic) and look into adding some alternative treatments to my regimen.

I don’t want this blog to turn into a compilation of the boring intricacies of my emotional response to having cancer, but I know that some people are curious and uncomfortable with asking me upfront about this aspect of my condition.

TLDR; I’m doing well enough that I forget that I should be trying to not get cancer again soon. Trying to not forget.

*Not totally true – some minor lifestyle changes have occurred due to me trying to “live without regrets”, for instance:

-I don’t try to find a nice rounded-looking number when I’m adjusting the volume on the TV. Yeah, that’s right, I could set the volume to 25 cause it looks better than 24, but 24 is “just right” so DEAL WITH IT, WORLD.

-No more flossing. Flossing makes my breath smell better, but if cancer wants to condemn me and my teeth, then I’m not investing time making them plaque-free.

-Josh cleans the cats’ litterboxes. I don’t do that anymore.

If I were super-rich, the first thing I’d do is buy an MRI machine and learn how to operate it.

 

brain bloggin

Hey reader,

This is my new all-purpose blog, though I expect there will be a strong brain cancer theme going on (health updates, travels, etc).

I had an  MRI on 9/16 that showed no evidence of progression, so I am going on with round 3 of chemo in two weeks. My hair is growing back everywhere on my head except for where a giant beam of radiation hit the tumor site. I started a very low carb/sugar diet in July and now have regular dreams featuring cake buffets/donut hoarding.