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.

A Walk Through the Woods

Jen and I took advantage of the beautiful weather last Saturday and went for a hike.  Jen was able to hike for a little over an hour and she probably could have gone longer, but we are easing into it.  She has also been able to resume physical therapy.  Each year her insurance only covers so many sessions.  We used up the majority at the beginning of the year, but had left several sessions unused in case they were needed.  Since we are at the end of the year, Jen can now use what is remaining.  The PT is definitely a good motivator for Jen and they are able to help target her balance issues and the drop foot that she still has from the surgery.  And now some pictures of Jen on the trail.

A Stable Scan!!!

Jen had another stable scan earlier today!  In addition,  the tumor that caused a little concern on the previous scan appears unchanged as well.  We will still continue to closely monitor this area (as well as all the other tumors of course), but her doctor definitely sees it as a good sign that his previous reading from the last scan may have been a result of some other factor besides growth.  Jen will begin her 12th cycle of chemo tonight.  This will most likely be her final cycle - at least for now.  Although discontinuing the chemo will be a little scary,  we look forward to the opportunity for Jen's immune system to recover and perhaps be able to better fight the cancer.

Music Party 2015

One of the things that Jen & I have greatly enjoyed doing over about the past decade is hosting a music party.  This year marked our 9th music party.  For those of you unaware, the concept is simple - everyone contributes several personal song choices.  During the party, everyone's songs are put into a massive playlist and the songs are randomly shuffled.  We also compile the entire playlist onto a disc for everyone to take away so that they can revisit the songs later.  The songs can be well known, obscure, or even rare.  People share songs they are moved by, songs they love, songs they wish simply to shine a light on, songs that make you think, songs that make you feel, or songs that just make you want to dance.  It has been interesting to watch people's musical tastes evolve over the past 10 years.  You really do gain some insight into someone's personality from the songs they choose to share over time.  This year we took the party on the road for the 4th time and rented an amazing house in Temecula.  We all gathered together for three nights and 4 days of revelry and camaraderie.  Many of those who attend are musicians themselves and some of the time was also spent with live spontaneous jam sessions.
     After Jen received her diagnosis and after we had begun treatment, we also discussed the things Jen would put on her bucket list.  Another music party was near the top.  Now of course, she wants another one next year - and hopefully many more following that.



This was the cover art for this year's disc.


For those of you interested in checking out Jen's picks for this year I have included links to her chosen songs for 2015.

1. https://www.youtube.com/watch?v=JkMwq1aAAfE
2. https://www.youtube.com/watch?v=Fgjfi1DU1mQ
3. https://www.youtube.com/watch?v=-gh-Lv7EEm0
4. https://www.youtube.com/watch?v=ChOz7zOMkOU
5. https://www.youtube.com/watch?v=JB6WZu8IAZg
6. https://www.youtube.com/watch?v=FBnANoNZkVA
7. https://www.youtube.com/watch?v=AiS37_EULj8
8. https://www.youtube.com/watch?v=qGEubdH8m0s
9. https://www.youtube.com/watch?v=y__Zs3e6BdA
10. https://www.youtube.com/watch?v=BloxxEFwibo

Jen's next scan is tomorrow - please keep us in your thoughts and prayers.  And now for some pictures from the weekend.  The party fell on Halloween, so some people chose to dress a little.

An afternoon impromptu Jam.

Chrissy feeling the groove.

 

 

Jen getting her boogie on.

 

Rich getting his boogie on.

Paul just getting his freak on.



This was our backyard.  The pool is empty now, but we spent a bit of time in it.

Morning Jam session - the best kind of jam with toast.

 

Temecula is wine country - so of course we took in some wine tasting as well. 

 

October 26th - 14 Months

Today marked Jen's 14 month anniversary since diagnosis.  This is a sobering milestone of sorts.  It marks the median survival rate of patients diagnosed with glioblastoma.  This means that half the people diagnosed don't survive to see 14 months.  We are grateful to be on the positive side of this curve.  The statistics are grim - of those who make it to 14 months, only 40% of those will go on to see a 2 year survival.  Again, we are hoping to be fortunate enough to be among the 40%.  Jen has become fond of quoting Han Solo from The Empire Strikes Back - "Never tell me the odds."  She continues to bravely face this thing and if anyone can beat this, I know that she will.  There is new and promising research that goes on every day.  If anyone caught Joe Biden's interview on 60 minutes this last week, he talked about the death of his son Beau from brain cancer.  He also talked about how he and the President have discussed pushing an initiative towards curing cancer much like Kennedy did to put a man on the moon by the end of the decade.  I hope they have the tenacity to follow through on this issue and that our current political quagmire doesn't impede any efforts to do so.  Just imagine where me might be today if we had invested even a fraction of the money that we have spent on the wars of the last 2 decades.  Apologies for getting a little political, but it is hard to fathom that this could not be an issue that all parties could agree upon.  One can hope.

Jen's next scan is November 4th.  We welcome your thoughts and prayers.

On Sunday, November 8th there is a race/walk for Brain Cancer taking place in the LA area.  It is at Dockweiler State Beach in Playa del Rey.  If all goes well with Jen's next scan she will unfortunately be 5 days into her 12th chemo cycle and most likely be unable to attend.  I haven't planned for it yet for myself as she often needs help at home that far into her chemo, but if she is feeling okay I will probably try and make it out there.  If anyone else in the LA area is interested please check out the following link.

http://www.heroesofhoperace.org/index.html

On a lighter note, Jen and I went to The Rise of the Jack o' Lanterns at Descanso Gardens this past weekend.  Halloween has always been one of Jen's favorite holidays and she really enjoyed being able to see this.  The pictures don't really convey the intricacy of all the carvings the way they look in person, but everything you see is made of hand carved and or painted pumpkins.

 

 

It's hard to get the scale of this, but this tree had over 1,000 hand carved
pumpkins strung about it like Christmas lights.

There were many larger displays like this one each composed of many, many
pumpkins

 

A sea of jellyfish - part of an undersea area

Another Stable Scan ... mostly

Jen had her most recent scan this last week.  Although the radiologist read the scan as stable, Jen's oncologist does see some increase in the contrasting region of one of the tumors.  This is a very small increase, but worth noting and tracking.  An MRI is not a perfect view inside the brain and this could be the result of many things including scarring, a greater amount of contrasting fluid that may have been used for this test, or it could mean slight tumor growth.  In any case, the amount is minimal and her doctor does not feel we should change course.  The possible growth is small enough that it would not be labeled as recurrent in any case so there are really no other options to even consider at this stage.  We may know more next scan or this may be the kind of thing that we won't have a firm idea of what is going on until after several more scans.  We also followed up with Cedars Sinai this week and their conclusion is the same. 

Jen began her 11th cycle of chemo on Wednesday night.  If the next scan is good in 4 weeks she will then begin her 12th cycle of chemo at that time.  This will most likely be her final round of chemo...for now.  Much of this is not an exact science.  Why only 12 cycles?  Why not 13 or 18 or 24?  There are no definite answers other than this is what is done.  Some patients have had more cycles of chemo, but there is no data showing any benefit to doing this.  Meanwhile, the chemo itself can have long term harmful side effects like leukemia - so staying on it indefinitely is not really an option either.  Both UCLA and Cedars feel like Jen should stop after 12 and then we will continue to follow up with scans.  It is possible that she may resume chemo at some date in the future, but this will depend on her future progress.

Novocure, the device that Jen wears on her head was just approved by the FDA this week as a treatment for initial diagnosis of glioblastoma.  Previously, it was only approved for recurrent use.  Jen, however has been on the device since the end of last December and began using the device shortly following her initial diagnosis.  We are fortunate that Jen was able to do this, since it is only now approved for this use.  This would not have happened if we didn't push for using the device.  One really does need to advocate and fight for one's own healthcare.