It's been a busy couple of weeks

This post will contain a lot of completely unrelated events.  Jen and I have been extremely busy for the last several weeks and I am just now getting a chance to post about some of our activities.

First up, Jen and I hosted our annual Oscar Party a few weeks ago - something we have been doing for at least 20 years now.

Lisa won the Trivia prize

Earl won the Boobie prize. Yes it is a pillowcase - Nick is watching you while you sleep.

Ervin won 3rd place

Kathy won 2nd

Tom won 1st

Every Mad Max movie ever.

 

Srini & Jen do their best Blue Steel imitation.

Thanks to everyone who came. 

The following weekend, Paul & Mary came to stay with us and the four of us along with Rich & Terry took in a concert.  The Mavericks.  If you don't know them you should definitely check them out.

With Paul, Mary, Rich, & Terry

 

And now a few videos of Jen dancing.  She danced most of the night!

 

 

Last weekend we attended our second UCLA Brain Tumor conference.  It was again informative and also a great chance to connect and share stories with others going through a similar situation.  The most promising areas of research are in the areas of immunotherapy and vaccine trials, although nothing yet has had the response rates that we have seen in recent years in other types of cancer.  As I have mentioned before, brain cancer is one of the hardest to treat because of where it resides and the presence of the Blood Brain Barrier that normally protects us from toxins but also prevents drugs from reaching the tumors as well.

This year was the first time they had an entire presentation dedicated to the Ketogenic diet.  Something Jen has been doing for over 17 months now.  Jen was pointed out by the presenters and Jen and I helped to answer questions and Jen even brought out her lunch and snacks to show examples of Keto meals.  The room was packed.  There is definitely a lot of interest in this, just not a lot of human research as of yet.  Trials have been hard as the compliance rate is not very high and there is no major pharmaceutical company funding any research.

Then, a few days later, Jen and I took in another concert.  This time we saw Jake Bugg.  He just turned 22 less than a month ago and already has 3 albums under his belt.  Music is such a source of joy for Jen and myself.

Jen under the marquee

 

Jen is also presently an active street team member for the Joshua Tree Music Festival

Jen handing out flyers for the event



And lastly, one of our friends Lisa, who works at Warner Brothers invited us to a sneak preview of Universal Studios Harry Potter Wizarding World.  This is the newest addition to the theme park.  It doesn't open to the general public until April, but we got a sneak peak.  In addition, we got to spend the entire day at Universal and take in all the rides as Lisa's guests.  We planned carefully and Jen did use a wheelchair to conserve her energy and give her something to hang her Novocure backpack on.  Jen was definitely tired at the end of the day, but she really had a great time.  Thank you, Lisa!

The new Wizarding World section of the park.

Jen tries her best to keep the sun from heating up her arrays.
They are very sensitive to the heat.

Lisa, Jen, & Kathy

 

The Backlot tour

Bates motel and the Psycho House on the hill.

Look, there are vacancies.

 

Dr. Seus

Flash Flood.

 

Crashed plane from War of the Worlds.

 

 

We had to cover up Jen, so her Novo arrays didn't get wet on the Jurassic Park water ride.

 

Jen & Lisa

Wow, it sure has been a busy few weeks.  Living life and trying to make the most of each day.  Fortunately, we don't have a lot planned for a few weeks (besides doing #%$@ taxes).

Jen's next scan is in a week and a half on March 30th.  We continue to welcome all of your support, prayers, and well wishes as we again hope for a positive scan.

One final thing.  For those of you who do a lot of online shopping, I am not sure if you are aware of Amazon Smile.  This is the same storefront as Amazon, same prices, except a portion of most purchases can go towards a charity of your choice.  We have selected Musella Foundation, which has been a valuable resource and they do a lot of research funding for brain cancer.  http://www.virtualtrials.com/musella.cfm  There are several other leading brain cancer organizations to choose from as well.  You can of course also pick from hundreds of additional charity organizations that may be nearer to your heart.  I would encourage anyone shopping there anyway to utilize this resource.  Every little bit helps.  You can google Amazon smile or go to:
https://smile.amazon.com/

Another Stable Scan!!!

Last week Jen had her latest MRI and the scan was again stable!  This now marks almost 18 months since diagnosis and 17 months of stable scans.

I apologize for the late posting and the lack of activity on the blog in the last 6 weeks.  I will try and be better about my posting.

Jen continues to do well, though she does say that she feels increased memory and cognitive difficulties - could be do to the radiation.  She stays active and we even managed to get in a 2 mile hike about a week ago.  We are considering trying a vaccine drug to target a specific protein present in Jen's cancer cells.  I will post more specifics if we decide to and are able to pursue this treatment option.

Jen and I attended a great presentation on the latest developments in Immunotherapy for targeting cancer.  These approaches have proved very effective against certain types of cancer such as Melanoma, but they are still trying to attain higher success rates.  Unfortunately they have been less successful with primary brain cancers, but many are presently in clinical trials.  I have mentioned before the difficulties in treating brain cancers due to the body's own defense mechanism - The Blood Brain Barrier.  This makes delivering effective treatments to the brain particularly challenging.  Let's hope there are some good results from the current clinical trials underway.

At the urging of a fellow caregiver I met at UCLA, I attended a support group for caregivers of people with Brain Tumors.  Not sure I will be returning anytime soon.  I was hoping for a forum to be able to exchange info related to everything from treatment, legal and financial options.  Instead it was largely a place for people to be able to vent.  I've got to say it was one of the more depressing things I have ever done as I listened to more than one person talk about how they have come to hate their spouse and would like for them to just die.  I realize where this disease can lead to and Jen and I have been relatively fortunate so far, but I can't imagine ever feeling this way about Jen.  Fortunately not all the caregivers felt the same way either, but there definitely are challenges unique to brain cancer.  You have all the normal cancer issues compounded with issues similar to traumatic brain injury and degenerative brain diseases.  I am glad I went though as I met a woman whose husband was just diagnosed a couple of months ago.  She and I have been in communication and we have been sharing info and I have been helping her to navigate some of the treatment options available.  Her and her husband are also pursuing a Keto diet as well as the Novocure.

On March 11 & 12 Jen and I will be again going to UCLA's annual brain tumor conference.  This is free and we welcome anyone in the LA area who is available on either day to join us.  If interested in attending with us, please let us know.  This was a great learning and inspirational experience last year and I am sure this year will be no different.  For more info please check out the following link:
http://www.neurooncology.ucla.edu/

Resolve

Happy new year!  New year; fresh start.

 

As you can see from Randy's post below, my first scan of the year was yet again stable! And that was aided only by my ketogenic diet, and the novocure device. There may be remnants of last November's 12th chemo cycle, but only that--remnants. I get my next scan in 6 weeks.

 

I never make New Year's resolutions, except for the one I made last year; which, was to fight this cancer with everything I had in me. And while I stayed stable all year, I found myself getting lazy. I was not fighting with all I had. My scans were stable, and I began to feel relaxed, and complacent. Which is an arrogant place to be when you have one of the most aggressive types of cancer possible. I am LUCKY to have lived this long with this horrible disease, and it is certain that I intend to keep going.

 

This year my resolve is to continue that fight, with even more vigor. This is where the rubber hits the road, and I know it. I begin this year without the aid of chemo.

 

This year, I resolve to really listen to what my body is telling me to do. To be active EVERY day, whether that means a little gardening, or a lot, to do my prescriptive exercises as assigned by my therapists. To give myself the rest that my body needs, both physically and mentally, do more research, to keep measuring my food exactly, and stay on the novocure. My own immune system is in charge, and I will see where it takes me.

 

Thank you all who have helped me and Randy through all of this, either with meals, or rides, support emotionally, financially, or with your prayers, good vibes, and LOVE. We are so blessed to have you all.

 

Wish me well as I embark on this journey called 2016!

Another Stable Scan!!!

Yesterday Jen had another scan and it was again stable!!!  She is now at almost 16 1/2 months since diagnosis and almost 16 months progression free.  In the world of Glioblastoma Multiforme this is extremely good, especially considering Jen was unable to have surgery to remove any of the tumors.  This scan was especially encouraging since Jen has been off chemo for almost 2 months now (the longest she has gone since beginning treatment).  This was certainly a great way to begin the new year.  Her next scan will be in 6 weeks on Feb 17th.  Thank you to everyone for all the positive support and encouragement.

A Quick Update and some pictures from Deutsch's Christmas Party

Well it is a new year and Jen is still fighting strong.  Tomorrow Jen gets her next scan - please keep Jen in your thoughts and prayers as we look forward to a positive scan.  Jen has now been off chemo for 2 months.  This is her longest period without chemo since she began this fight.  Tomorrow's scan will be the first one outside of the chemo's influence (although there could be some residual effect).  Meanwhile, without the chemo on board Jen continues to feel stronger each day and we are hoping that her immune system will be able to fight harder now that it is not constantly being attacked from the chemo.  I will try and post the scan results sometime tomorrow or Thursday.

Some of you may have noticed that there is a slight change to the website.  The front end website no longer exists (after they wanted an 800% increase in hosting fees).  The blog was really all that was being updated anyway.  The domain jenscancerfight.com still works though, and will now take you directly to the blog.

I know Christmas is past and I am late in posting anything, but Jen's work Christmas Party was just too much fun and I wanted to share some pictures from the event.  The theme was Après Ski and the dress code was either back at the ski lodge or black tie.  Jen chose ski attire.  The event was held at the newly revamped historic Clifton's in downtown LA - a very cool space.  Anyway, here are some pictures from the night.

Yes, it is snowing in LA thanks to a little help from Hollywood.

 

 

 

 

 

 

Deutsch adds some amenities to Cliftons.

 

Notice the squirrel on Jen's shoulder that came along for the ride.

Jen & I with her boss Cluckie and Mara.

 

 

Much of the décor is actually part of Clifton's lodge theme.

Cluckie, Mara, Jen, & Norman



This tree is amazing and stretches through all 4 stories
of the building.

 

Gaming tables for charity were on the third floor.

 

Of course there was a DJ.

 

If you look by the fireplace you can see me taking a picture
of Jen (leaning against the tree)

Jen with a ski bunny.

Jen visits Deutsch again.

Last week Jen was invited to her departmental Christmas luncheon at Deutsch.  It was great for Jen to see everyone again.  Deutsch has a wall dedicated to the employees with 10 or more years called the Deutsch Decade Club.  Jen's employment with Deutsch officially ended after she had been there 9 years, just shy of making the wall.  Well, even though Jen is not technically an employee anymore she is still very much a part of the Deutsch family and at her most recent visit they presented her with a plaque honoring the fact that she has been with them for 10 years now.  Her company has been unbelievably kind and generous.  Jen still receives regular gifts from Deutsch and her boss John has even left her desk with all of her personal things untouched waiting for her to return if at all possible.  Thanks again to all of Jen's Deutsch family for making her and I feel so loved.  It really does mean a lot.

 

 



Jen with John, Dana, and Nancy

 

 Jen is feeling great as she continues to detox from the chemo.  Unfortunately, she did take a fall about 2 weeks ago and broke her pinky.  Today, she got a new X-ray and the doctor informs us that it is healing beautifully and it should be fully healed in about 3 more weeks.

Another Stable Scan!!!

Jen had her most recent scan yesterday and it was again stable!!!  This marks 15 months since diagnosis and 14 months of stable scans!  Last month Jen completed her 12th cycle of chemo and we are now suspending any further chemo for the time being.  This means that the only therapies she will be doing for cancer treatment are the Novocure (electric arrays on her head), her Ketogenic diet, and a few supplements (Longvida Curcumin, Green Tea, Probiotics).  We are obviously a little nervous discontinuing something that may be providing a benefit, but we are both hoping that without the continuous chemo, Jen's own immune system will finally have an opportunity to rebound and join this fight.  Jen's next scan will be in the beginning of 2016.  Thank you again to all who have helped us get through this past year.  We couldn't do it without the love and support of our friends and family.