Tuesday, September 1, 2015


I don't have much to say other than I never wanted to get to this place. This place I have feared for over two years. As many of you know by now, we did not receive the news we wanted yesterday, which was "everything is either shrinking or stable in the brain." No, instead we learned that one little fucker has increased in size. That fucker, excuse my language, but I am angry about this, is located on the brain stem. Basically, we can no longer radiate this spot - and cannot do surgery because of the location. This location is not ideal.

Jon is taking this really hard. Harder than ever before. I fluctuate between faint optimism and total "fuck the world and all the cancer in it... where are my xanax." I'm just being honest. This is a raw and very emotional time. I pray to God it will pass and there will be hope of some clinical trial we can try, but the waiting period is agony. On a serious note, I could just numb myself to everything and knock myself out with medication, which is exactly what I did yesterday. I also managed to email a slew of people and doctors in hopes they can help us. If you could do me a favor and pray really hard that these people get back to me with some positive news, that'd be great.

As you all know, we opted to do traditional chemo in May. We all hoped it would last longer, but that hasn't happened... but maybe, if anything, it allowed a bridge. We are looking into the same clinical trial we had in mind then - Pfizer 3rd Generation (PF-3922) - for those LC savvy. There is a site in Nashville and Boston, and our doctor here at Emory was trying to desperately get it here before Jon needed it. But, the hope is we can start on it in Nashville or Boston. There are a billion requirements for a clinical trial and one reason we opted for chemo in May was because it seemed so impossible. You have to meet the criteria, insurance is a bitch and doesn't like to pay, etc, etc, etc. We started a GoFundMe campaign then and raised a lot of money. We have a good bit saved, but I am going to open the fundraiser back up. Honestly, people ask how they can help, and I hate to say it because it makes me feel helpless, but that is the best way you can help us. Meal trains are nice, but most of the food gets thrown out, especially when our house is turmoil... we really don't feel like eating. That would be different if we had kids. So even $10-$20 bucks you would put in a meal would be helpful.

This summer, a lot of the money raised went toward paying for expensive, experimental drugs that insurance wouldn't cover and that the doctor thought might help Jon gain weight or relieve pain from chemo. It also went toward gas to get to our many Emory appointments and living expenses. We're young, we don't have great, successful (or even steady) jobs, and often times it feels like we're fucked. Especially as I contemplate the next few months. I'm trying to pursue my MFA so I can actually get a descent paying job and I get a good amount of money (loans which I will have to pay back) to live on while I'm in school. Most of my tuition is paid, but this money helps me pay rent, bills, etc. Right now, I don't know if I should even try the Fall quarter - maybe I should just not go (or when I'm really down maybe I should stop all together-what's the point, I think). Anyway, thinking ahead, I quit two steady jobs in Serenbe because I have an interview on Thursday for a tutoring job at SCAD - great opportunity that pays really well and would look great on my resume. Am I going to go? I don't know. How am I supposed to tutor students when my shit is so not together. I think I get my shit together, and our world implodes. They say plan for the future, and I do, it makes me feel hopeful and, God forbid this word, NORMAL. But then something like this happens and, pardon my language again, I'm fucked.

I was gonna keep this short? Right, I guess I have a lot to get out and no therapist... something else (that was free) that would come along with my SCAD enrollment. They offer a therapist on-hand to help students deal. My Humana health plan is not accepted by any therapist I can find within an hour of where I live - thank you very much political officials who work so hard to keep mental wellbeing out of my reach. Anyway, I don't have too much to offer right now. I'm going to inch my way through this day between tears and screams and trying to be here for Jon - because as awful as I feel - I don't know what he's going through. I don't know how to know. It's just a bad situation. Our best chance at the moment is that I hear back from Dr. Shaw in Boston and that either the trial in Boston or Nashville will accept us and we can get there by the end of this week or beginning of next. It has to happen fast though because of the location of the tumor - it could start causing neurological issues and seizures. This pfizer drug, is supposed to be good at getting into the brain. If it could just stop this one tumor... we'd be okay. At least for a while. God help us. I ask for mercy every day. I'm not super religious, but I pray. And I hope that death is not the end for any of us.

That's it.

Oh, and if you want to donate something... anything... it would really help us out.


Thank you all for being there for us. As sorrowful as I sound today, I don't know what I'd do without your love and comfort during this terrible time.

With love,

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