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.

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.


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.

Jen & I celebrate our anniversary and more importantly... Another Stable Scan!!!

First, the great news - Jen had her latest scan this week and it was again stable!  She began her 10th cycle of chemo on Wednesday night following the scan results.  This means we are now approaching 1 year of stable scans.  As I mentioned previously survival time is based on the date of diagnosis, which is now over 12 months.  However, between her diagnosis and the beginning of her actually beginning to fight the cancer with radiation and chemo about 3 weeks lapsed while she recovered from the surgery.  During this time, the cancer tripled in size.  I still believe a lot of this rapid increase was due to the steroids that Jen was taking in order to manage the swelling following the surgery in combination with a typical hospital diet rich in carbs and sugar.  In fact there was a new study completed in just the last couple of weeks that concluded that patients taking steroids did not fare as well as those who didn't.  This is something we had come to intrinsically believe through research on our own about a year ago.  This is the same rationale for the Ketogenic diet that Jen is on.  Cancer loves glucose and steroids increase glucose levels a lot.  In fact, while she was on the steroids in the hospital they had to give her insulin injections in order to help counter the elevated glucose levels.  It is common for patients to continue taking steroids, especially throughout the radiation as this also creates swelling.  We worked with our doctors and fought to avoid taking steroids unless absolutely necessary for Jen's health.  So as we approach 1 year of stable scans, we count our blessings and are grateful that Jen has continued to do so well.  I absolutely believe her resolve, attitude and choices have helped to make it so.

This week, just prior to Jen's latest scan, we celebrated our 8th wedding anniversary.  Jen and I have been married for 8 years, but we have been together for 28 years.  We got away for a night and spent it just relaxing at a motel right on the ocean.  This is the place where Jen and I got engaged.  We both had a great time and then receiving the news of the scan this week made a perfect gift.

The view from our room

Relaxing by the ocean

This was our dinner table for our anniversary.  Can't beat the view.

In case you can't read it - Jen's shirt says "Never Give Up".  It is gray in support
of Brain Cancer awareness and was a birthday gift.  Thank you Jen Langford.

Jen's Birthday

Last Saturday night we celebrated Jen's Birthday with a party.  Jen spent her birthday last year in the hospital recovering from her brain surgery.  Thanks again to Cheryl for bringing the party to Jen last year with the addition of a few close friends.  We took over one of the conference rooms in the neuro rehab wing for a brief, but appreciated celebration.  This year it was really nice for Jen to be able to party at home and to see so many friends come out to share the evening with us.  Jen and I both had a great time.  I know Jen loved seeing each and every one of you.  Thank you to all who attended.  I have only a few pictures, but 2 great videos to share.

And now, for an original song from our dear friend Paul.

Jen and Randy get away for a few days

Jen and I recently spent our second time away from home in the last year.  We have come to know one of the owners of our favorite local winery and he invited us to spend 2 nights in their guest house in the midst of the vineyard.  He also set up VIP visits to several other neighboring wineries.  The experience was incredible and we are so grateful for all of his generosity.  Thank you Alexis!
It was harvest time when we visited so it was cool to see the grapes being pressed and barrels being filled.



One of the Presses.

Pumping from tank into barrels.

Jen amidst the barrels.

Concrete Eggs - good for Chardonnay

Tasting at the vineyard.



The guest house we stayed in.

This was the view from the front of the guest house.

Jen enjoying the sunset.





Fortunately, even with Jen's extreme Ketogenic diet, she can still
enjoy an occasional glass of wine





Murphy - one of the wine cats.

Riding an ATV through a nearby vineyard.

As long as the drought doesn't affect the wine we are all good.





Stopping for a rest on the trip home.

It was good to get away for a few days, but this is what we came home to.
Notice the temperature.  Fortunately, it only gets this hot on a few days a year
and we missed 2 of them.