Wednesday, December 16, 2015

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.

Thursday, December 3, 2015

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.

Wednesday, November 18, 2015

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.

Wednesday, November 4, 2015

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.

Tuesday, November 3, 2015

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.
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. 


Tuesday, October 27, 2015

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.

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

A sea of jellyfish - part of an undersea area

Saturday, October 10, 2015

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.

Wednesday, September 30, 2015

Moon Musings

As Randy mentioned in his post, during the Grace Jones show, we had a special treat. A super moon lunar eclipse!  That experience alone, inspired me to post this poem.

In the last few months, I’ve picked up my fickle pen again to see if I could complete a poem. After having not written much since college, this may not be polished work, but I’d like to share it with you all.  Almost as if it was meant to be, I began writing it on a New moon, and completed it on the following New moon. I had no plans to do this, it just turned out that way.

At the Grace Jones show that Sunday night, September 27th, we would see the moon go through all of her phases in a few hours.  Metaphorically, anyway.

Nature, can do things to us - to our minds that makes our imaginations soar. Here’s the poem.  It’s called Phases.


The moon is New.
Impossible to see; shrouded in her inky cloak.
She allows this night alone for the stars to take center stage.
Shimmering, glittering against a backdrop of pure blackness,
the stars put on an impressive show -- a celestial kaleidoscope of constellations--
Ursa Major, Cassiopeia, Perseus, the Pleiades…
Venus, Jupiter, Saturn and even Mars make their appearances as well,
tracking across the sky in their predictable orbits.
The entire Milky Way herself --
her graceful arms sweeping ever outward, twirling, whirling,
in this dance that has no end.

But the moon is a jealous lover.

And so, night by night, she will shed this dusky cloak,
like an astronomical strip tease.
It begins with a little slip of the cloak off of one shoulder.
Then, night by night, gradually revealing more of her
glowing, Gibbous beauty.
Night by night, until she becomes Full.
All fat and round and bright,
letting loose her siren song over the tides.

How boldly she shines in unashamed nakedness!

Then, night by night, she coyly pulls the cloak
back over her shoulder, ever so slowly.
And, night by night, she turns away, until we can see her no more.
She is New again.
Night by night, in this dance that has no end.

Another trip to the Hollywood Bowl

Jen and I went to the Hollywood Bowl again this past weekend with a few close friends.  We saw Grace Jones.  This is a show that Jen has been looking forward to for months and Grace did not disappoint.  She sounded great and I've got to say this 67 year old woman is cooler than I or any of you reading this ever were or will ever be.  Jen was on her feet dancing for most of the show.  The night was especially memorable because the Bowl is an outdoor venue and as we saw the show we were also able to witness the supermoon lunar eclipse taking place just above us.


Jen and Lisa

Supermoon Lunar Eclipse also called a Blood Moon.

Jen will be going for her next scan next Wed, Oct 7.  Please keep us in your prayers as we hope for another positive outcome.