Reliving the Glory Days

Morning Friends!

Dan and I have our triathlon this weekend. Remember that? Yikes. Have we been training? No, not really. We've ridden our bikes around the block. We've jumped in the sound a couple of times. And we jogged two miles last night. It's almost as if we've forgotten that we're not in our 20's anymore. Fingers crossed for no injuries!

This was all a harebrained idea to relive my glory days, the days before diagnosis. When I was diagnosed in 2010 I had completed two half marathons so far, and I wanted to take it further. In fact, I literally just went back in my emails to dial in this message from two weeks before I was diagnosed:

Megs,

In three weeks I'm off puddle jumping from Iceland, to Sweden, to Poland, to the United Arab Emirates and back. It's a really quick trip though, only about three weeks. I'm really excited! Going to go see the Polish family and then down to the Middle East to see one of my best friends from college - quite the adventure! You're tiny enough, you'd probably fit in my suitcase. :)

The Triathalon is in Lake Chelan, and it's called The Chelan Man and there's a lot of different options. It's on the weekend of July 17th/18th. There are different races on Saturday and on Sunday. I think I want to try the Triathalon Sprint: http://www.chelanman.com/index.php?page_id=302

The Olympic Triathalon looks great too though - just really challenging. Might be really fun to do as a three person relay though - but at the same time I kinda want to try an entire three-leg course. People could stay at my place, or we can camp out on the riverfront at my parent's house - that would be fun!!! Jet skiing to get us into the competitive mood of the race?!?! 

-Jess

As you can imagine, I never did get to take part in Chelan Man in 2010, and the trip was cancelled. My life, from two weeks on, was forever changed. It's bitter sweet to try and compete in this race (although I use the term "compete" lightly), because it reminds me of my old life. My carefree life. That ignorance that allowed me to think that my problems were important. It's going to be fun, and hard. It's supposed to be 97 degrees as a high on race day. Dan is doing it with me, though, and we'll just have a lot of water on hand, and seizure medicine as a given. This will be tricky when sun, dehydration, stress, and heat all trigger seizures, but it's something I feel compelled to do. To live my life and try to get back on track. To be the person I once was, but better. Jess 2.0, new and improved.

I'll post pictures next week, if I survive that is. Ha! Of course I will, I've navigated tougher waters that's for sure.

The Post-Traumatic Stress of Cancer

As you guys can tell, I haven't been posting much. I've been trying to soak up as much life as possible. There's so much to see and do and experience. Half the time it's just around my own neighborhood, but also, since I've completed the years of Chlorotoxin, I'm free to eat and drink whenever I want. I don't have to administer medicine every four hours, and it's freeing. It's been weird, and a daze and a miracle and a gift. To feel human again, and "normal".

It took a few weeks to absorb it. I kept withholding food and water because the treatment protocol had been ingrained into my system. To be able to drink water whenever I want, all day every day, has been the most exciting thing. It's not that the treatment protocol was so hard, necessarily, but to go without water for four to five hours a day when dehydration triggers seizures has certainly been a challenge over the past two years. It was debilitating. The only thing that I fear more than a seizure is a recurrence, just to put it in perspective.

Honestly, I'm literally terrified every second of every day. I'm able to shove it off and distract myself and breathe and align myself with gratitude, but that when the night falls, when silence creeps across the threshold, my mind gets louder and louder. The cracks in my brain, the hot spots, the unique headaches, start talking. They nasally laugh and tell me in their jackal voices that I can think I'm winning, but they know something I don't. They scoff and trip my walking mind. They tell me I'm dying, that everyone with this cancer dies.

So I don't sleep well. I read my books, my lids drag down. I turn off the lamp, I sigh that deep sigh, and I start to drift. And just between thoughts and fantasy, my body jerks and tenses. My pores prickle and sweat. My heart races, my head spins with delirium. I think of everything wrong that I've eaten, every supplement I forgot to take that day. I kick myself for not exercising, for not taking my care more seriously. Because the truth is that I'm not as diligent as I used to be. My diet is not on point, I am not the machine I once was. I want to live, but at the same time I want to LIVE.

I don't think I'm alone in the late night self loathing. I don't think I'm alone in the late night overthinking. I wish it was something I could turn off, and boy do I try, but it's in my psyche. It is who I was from the time I was in the womb. It's in my core, and as much as I meditate, as much has I repeat my mantra, "Thank you. Thank you. Thank you." It's not enough, this doubt, this overactive mind is on a cellular level.

So I live, and I ride my bike, and go for walks with my walking group. I garden, and laugh with friends, and play with our dog, and snuggle with my cat. I paint, and I continue to be awe of the fortune of my life, my health. But deep down, I continue to be scared. My body has memories of pain, a deep sadness, the fear of death, the throwback of when I was diagnosed, when I was awake and they were cutting into my brain. The flashbacks to the recovery, relearning how to read and use a knife. I feel great, I love my life, but I have post-traumatic stress that I live with, and can't seem to fix. And the fear is that I don't know if I ever will.

Thank you to the sweetheart who anonymously commented on the blog on the 4th of July weekend wishing us a wonderful holiday. It made me feel incredibly special. We went up to Friday Harbor our hometown to spend time with friends and family. It was magical. We even got out on a friend's boat to do some fishing and were surrounded by a pod of Orca whales. It is not lost on me that I was raised on a piece of heaven. Friday Harbor is a panacea to my soul.

How to get into the Duke Polio Virus immunotherapy trial for GBM

Hey Friends,

I received an email this morning from Life Extension (the supplement company) with details about Duke's re-engenineered polio virus immunotherapy that is having amazing results. There are whispers of cures, and miracles. It's not something that's applicable for me in my stage of cancer, but I'm here to help you get the information to see if perhaps it can help you survive. There is even a phone number for a direct call to be evaluated for inclusion in the trial. I hope this works for people. Good luck! Fight on my friends. Look outside the box, ask questions, know your needs, and keep your eyes open. 

Enjoy!

Jess

Duke Polio Trial for Glioblastoma

In 2013, Life Extension® announced a discovery that added precious years to people stricken with a lethal brain cancer called glioblastoma. The drug shown effective was valganciclovir, which is typically prescribed to treat cytomegalovirus. 

In 2015, CBS News 60 Minutes featured a story about research emanating from Duke University Medical Center showing complete responses in terminal glioblastoma patients who were administered a re-engineered polio virus directly into their brain tumor. The re-engineered virus prompted a powerful immune response against the viral-infected cancer cells that in some patients appear to eradicate their glioblastoma. 

The Magnitude of Human Carnage 

Each month, 1,000 Americans die from glioblastoma. Up until now there was no cure. Survival from time of glioblastoma diagnosis averages only 15 months. 

Valganciclovir extended survival to over four years in some studies. Doctors are cautiously optimistic that this re-engineered polio virus may be curative. 

How to Enroll in Duke University Study

If you or someone you know suffers from glioblastoma, here is the patient criteria needed to participate in this Phase I clinical study: 

1. You must have a recurrent glioblastoma (meaning you must already have failed at least one conventional treatment). 

1. You can only have 1 area of tumor. 

1. You must be fully functional, that means totally coherent and be able to walk and do things on your own. 

If you said yes to all 3, call and speak to Brittany at 919-684-5301and press option 1. Brittany will set you up to speak with the nurse who will continue with the medical screening process to see if you qualify to enter the trial. 

Questions Life Extension Asked Duke University

Question: How many glioblastoma patients is Duke accepting? 

Answer: There are no limits at this point. People have to qualify after they provide us with their medical histories and complete all the paperwork. If accepted, they then meet the nurses and doctors for their appointments. 

Question: How long is the wait to begin treatment? 

Answer: Treatment starts after the patient meets all the appointments and completes the screening. Patients start treatment as soon as everything is in order. 

Question: Are younger people given preferential treatment? 

Answer: No. 

Question: How many people are not getting treatment because of the favorable 60 Minutes report? 

Answer: No one is rejected. We have had a lot of calls, but have been able to handle them. The pre-screening questions help to eliminate wasting time so we can continue the screening process and see if people qualify for the study after all the preliminary work is done. That is based on them meeting their appointment times, sending in the paperwork and meeting all the other necessary criteria, etc. 

We Applaud Duke University…
But More Lives May Have Been Saved 

It appears this re-engineered polio virus therapy could have been introduced sooner had it not been for bureaucratic hurdles regarding human clinical research that Congress has to fix. Glioblastoma is considered virtually 100% terminal and no human should be denied access to an experimental therapy that has a credible chance of working. 

View the 60 Minutes segment about this new treatment for glioblastoma.

To inquire about qualifying for this Duke University study, call Brittany at 919-684-5301 and press option 1. If you meet eligibility criteria, Brittany will set you up to speak with the nurse who will continue with the medical screening process to see if you qualify to enter the trial.