Thursday, August 30, 2018

Jen's status

Jen has been moved out of ICU and is now in room #4133 of the Helford Bldg at City of Hope.   She is doing okay, but is having a great deal of difficulty with her communication.   The doctors say it will still be several days before we can assess her speech accurately due to the swelling from the surgery.
Jen did get out of bed today and was able to walk with a walker a very short distance.   Tomorrow they will step up her physical therapy as well as occupational and speech therapy.  She has been eating well and her level of pain seems to be getting better.  The doctors will probably remove some of the bandages tomorrow in order to examine the sutures.
Jen says she is still not up for visitors.  I will let everyone know when she is.

Tuesday, August 28, 2018

Post surgery

Jen's surgery went well.  As I  write this she is being transferred to ICU.  Jen is still very much out of it from the surgery but she is awake and talking.  The biggest risk in the next several days is from infection.  The surgeon said her scalp was paper thin in some areas.  They had to use a smaller suture to close, but they were able to get a tight closure.  We will have to monitor for any seepage over the next several days.

Jen had about 70% of the tumor resected.   Less than ideal but about as much as we had anticipated due to the sensitive area the tumor is in.  She had 2 infusion tubes implanted into her brain that the Car-T cells will be injected into as soon as they are able to.

Jen will be in ICU all of tomorrow.  As Jen recovers we will have to see if there was any further damage to her communication  ability from the surgery.   As I mentioned earlier, Jen was woken up during the procedure in order to map her brain function, so hopefully any damage will be minimal.  As soon as she is able to be transferred to a room I will let everyone know so that those who wish to visit may do so.  FYI - this Friday is Jen's birthday!

Monday, August 27, 2018

Moving forward with surgery

Jen has been cleared for surgery.  Both her platelet and white counts have risen enough to proceed.   She is scheduled for tomorrow at 2pm.  Following the surgery, Jen will most likely be in ICU for a few days.   Once she has a room, I will post the info for those who may wish to visit.

There are obviously many risks associated with brain surgery and Jen is still at an increased risk of infection due to the thinness of her skin from radiation  and Optune.  But, there are risks to not trying as well.

The concern is still Jen's communication ability.   She has already had a severe hit in the past few months and the surgeon won't be able to remove all of the tumor.  What is left behind will mostly be in her language area and we will have to wait almost 3 weeks after surgery before the Car-T can be injected into her brain.   Hopefully,  any further deterioration during this time will be minimal.   Jen's surgery will be done as an awake procedure so that the surgeon can be as aggressive as possible while hopefully preserving as much function as possible.

In spite of the many things that can go wrong,  we are hoping for a few crucial things to go right.   This is probably Jen's best chance for any meaningful outcome.   Things haven't been going in Jen's favor for the past few months - it's time to hopefully change that.  As always,  please continue to keep Jen in your thoughts and prayers.

Sunday, August 26, 2018

Uncertain Surgery (Post 1 of 2)

Jen's latest scan showed a good deal of progression as expected.  Her doctor at UCLA still believes she should move forward with the surgery, but City of Hope still has not determined whether she continues to meet their criteria.  They have seen the scan, but wish to conduct an in person evaluation.  Jen's platelets have risen to decent levels, but her white counts are now very low.  Not sure if this will be an issue for surgery yet either.  We meet with her surgeon tomorrow and he will determine whether or not Jen will have surgery on Tuesday.  We may not know anything until late in the day tomorrow.  I will try and make a quick post here as to whether or not the surgery is happening or not.

Poetic Musings (post 2 of 2)

Jen wanted me to post some poems she has been working on.  She wasn't sure they were finished, but she feels writing poetry at this point would probably be too difficult for her so she has decided they are as finished as they will ever be.

The first one is a re-post of  an earlier one followed by three more nature poems.  The last two are poems that Jen was working on about her brain cancer.


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.

Desert Nocturne – midsummer, California

As the sun slowly melts
behind the mountains
dusk begins in the canyon.
A few insects begin tuning
for tonight’s performance.
By the time we can see the first stars
dot the sky above, the symphony is well underway.
Cricket wings play the strings;
while coyotes sing soprano.
The whole amphitheater of the canyon
is singing in perfect harmony
guided only by their circadian rhythms.
A barn owl, comes screeching by, joining the chorus.
Motherly great horned owls sing their lullaby-
gently who-whooing us to sleep.
And we humans sleep, to the music of the night
with smiles on our gratified faces.

Virginia Nocturne

October 3rd, and the fireflies have all gone home.
I am not seeing their light show on this damp night.
But hush, listen-
for the Virginia nights have such cricketry!
The background of the crickets is heard in three different tones.
First, the baritone saxy sound that grounds the orchestra
with the bassy back beat.
The second layer, is like a telephone ringing and ringing
picking up the midtones.
The third layer is an uplifting chirp, a cheery “hello.”
Like a piccolo, used for punctuation.
The leaves on the trees haven’t started to change color or fall.
The forest around us is dense—so lush!
Breezes that come through
tickle every leaf on every tree
and every drop of water adds another layer
to the music of the night.
I hear a lonely loon on the pond
calling out for a mate. But there is no reply.
His finale, as I drift off to sleep.


As the stormcloud rises, so do the ravens.
From the valley floor they come;
They surf the air, like great waves,
swinging wing to tail, making crazy 8s in the sky.
They are black chaos.
Their cacophony fills the gloaming
With some impending magic.
The first fat splats of rain hit the ground.
The ravens settle on rooftops, in treetops,
on fence posts, on lampposts
and they are silent.
Then suddenly, and without a sound,
they scatter and are gone.
But here, in the mystical minds of men
our superstitions are stirring,
And we are silent.
We hold our bated breaths
and are waiting. . .
waiting …
waiting …


Into the rapids I fell.
I am tumbled against the boulders
with every turn of the river.
I try to breathe in the short moments
my head is out of the raging water,
but all I can do is cough.
I try to grasp onto a branch
that would pull me back to my “used to be,”
but there is no hope
my arms are broken on the stones
floppy, useless.
I can feel the current tugging on me,
forcing me downstream.
Another tumble through the racing, cold water.
I am spinning out of control in the deep, and dark.
The rapids mellow into a deep pool.
And I float on my back with my broken limbs hanging down,
voiceless, from the water
waiting for a rescue that may never come.

Beautifully Broken

I am beautiful.
And I am broken.
Today I am a kaleidoscope turning—
bits of fractured glass and light.
So beautiful; yet so broken.
What will I be tomorrow?
I can see myself
as a lightning struck tree
all alone on a rocky outcropping.
Still beautiful; with branches blackened and broken.
As a beautifully destructive ice storm --
encasing everything with a crystalline glaze.
Throwing prisms into the dawning sun.
I am in the complete safety of the chrysalis I build around myself,
trying to shed this cancer like an old skin
twisting and turning around, ready to be reborn
into something totally new.
I am reviving.
I am evolving.
I am living.
I am joy.
And I am beautiful.

Wednesday, August 22, 2018

Jen's status

Jen is still having occasional seizures although they are more mild and less frequent since increasing her seizure medication.  Of course, with the increase in seizure medication there is also increased tiredness.  Jen continues to have difficulty using her right hand, but today she seems to have a little more strength and dexterity with it than a few days ago - so hopefully more recovery is still possible.  Jen uses a walker now due to her balance issues and her speech and word finding abilities continue to be a challenge for her.  On top of this she is still experiencing pain from the Avastin - even though it should be mostly out of her system by now.  We are not sure whether this will improve or not.  She is still scheduled for surgery next Tuesday.  Jen is having another MRI tomorrow and we don't expect it to be good news.  The real issue will be whether to move forward with surgery and the CAR-T trial.  This is probably Jen's last chance and it is a slim one, but it holds the possibility of having a dramatic effect.  The issue presently though, is even if the trial works, Jen's disabilities are not likely to improve and will probably worsen from the surgery and time until the CAR-T infusions begin.  There is a chance that the immunotherapy drug Jen had 2 weeks ago could at least help to hold that growth at bay - we will have to see.  Jen still wants to fight.  We both have concerns over how well she will do with the surgery and recovery afterwards, but the right attitude is half the battle.  We may learn more tomorrow from Jen's MRI and visit with her doctor.  I will keep you updated.  Please keep sending your thoughts and prayers Jen's way.

Wednesday, August 15, 2018

Another rough week

Jen has been having a lot of seizures over the last 6 days.  She hasn't lost consciousness, but they haven't exactly been mild either.   She's had about 10 seizures starting last Thursday.   A couple have affected her right hand,  and speech.   Most caused facial twitching on her right side.  We have unfortunately had to add a third seizure medication to her regimen.  Hopefully once this med reaches a therapeutic dose, her seizures will be under better control.  She is having increased difficulty with both her speech and coordination.  Thursday before her first seizure she actually seemed to be doing okay - she worked out for 40 minutes earlier that day.  Seizures usually result in lingering issues  (increased confusion, speech difficulty, decreased motor coordination) that improve in the days following the cessation of neural activity.  It's too soon to tell how much Jen will bounce back in the coming days.

Obviously we are concerned as to what is causing the increased activity.  Continued cancer growth is probably the most likely cause.  The Immunotherapy Jen had an infusion of last Monday could also be playing a role. She is still scheduled for surgery at City of Hope in 2 weeks.  Right now 2 weeks seems like an eternity.  Hopefully Jen can recover, keep her strength up, and won't have any major declines before then.

Her platelet levels have also continued to decline from the chemo a month ago.  They seem to be leveling off and hopefully will begin rising again.  Jen's sodium levels continue to remain on the low side and we are seeing a nephrologist this week to see if there is any underlying cause.  Meanwhile, she has also begun taking a sodium tablet prescribed by her doctors.  Beforehand we were told that a salt tablet wouldn't affect her sodium levels and now they have prescribed one.  I still haven't been able to get any clear guidance on this whole issue.  Hopefully the specialist Jen sees this week will help to elucidate the matter.

As you can imagine, this has been a pretty emotional week.  Please keep us in your prayers.

On a happier thought, yesterday was the 31st anniversary of when Jen and I met.  We both wish the present circumstances were different, but we're glad to have been able to spend the day together.

Friday, August 3, 2018

Another progression & more timing issues

Jen's latest scan from yesterday wasn't ideal.  There is more growth, although the scan is a bit inconsistent.  The contrast enhancement shows growth of the cancer while the T2 flair (which is often more accurate following Avastin) seems stable.  Nevertheless, the growth in the contrast enhancement seems significant enough to consider the scan a progression.  Honestly, neither of us was that surprised considering Jen's increased speaking difficulties.  This is now Jen's third progression in just a little over 3 months.  We keep hoping to find something to hold it at bay for a while and haven't had much luck lately.

The timing for the CAR-T again seems to have run into a little bit of a bump in the road.  Jen had been on track for surgery on August 14th with the CAR-T infusions beginning sometime around Sept 4th, 5th, or 6th.  Apparently one of the patients in the current batch had a slight delay and the earliest they can now begin the infusions is on September 17th.  That is almost 5 weeks from the date of the surgery.  An ideal time frame is 2-3 weeks at the most. The problem with doing the surgery too early is that the cancer will most likely grow back completely during this extended time frame and the infusions will have a reduced chance of being effective.  Also, because of the location of Jen's cancer, they will not be able to get all of it, so we are essentially looking at going almost 7 weeks for a new treatment to start for the area that can't be resected surgically.  We had discussed delaying the surgery, but there is concern that operating later could also be more difficult if the cancer grows too much.  If Jen begins another type of chemo, it wouldn't wash in time to do the surgery and again we have concerns that it could tank her platelet counts too much.

We have come up with a plan though that may bridge the gap.  As I mentioned previously, we were exploring an immunotherapy drug that has worked for a lot of other cancer types.  We applied for compassionate use and a financial hardship waiver.  We have heard back from the drug manufacturer and they are willing to give the drug to Jen for free.  The good thing about this drug is that there is only a 2 week wash period before surgery.  So as the plan stands currently, Jen will receive an infusion of Keytruda (the immunotherapy drug being used off book) on Monday.  She will then have surgery on the 28th of August and begin receiving CAR-T around the 17th of September.  Obviously a lot can change and we have no idea if this will even work, but considering the timing issues and Jen's limited options this is probably her best chance.  There could even be an added benefit.  Both Keytruda and CAR-T are immunotherapies.  They could work synergistically and there is research showing that immunotherapy drugs may actually work best by delivering prior to surgery, followed by resection, followed by additional immunotherapy.  Delivering a pre-surgical dose may actually prime the cancer in a way that is more effective.  Whether or not any of this will work for Jen and her cancer is a large unknown.  But Jen's doctors and both of us feel it's worth trying.  We both know it's a long shot, but hopefully it works.

As always, please keep us in your thoughts and prayers.