Fuck Cancer

Jen's latest scan showed further progression.  We weren't surprised by this as her loss of function has increased since we began the trial.  Jen's right side weakness has increased.  Her balance is significantly worse and she now has zero use of her entire right arm/hand.  Jen is now in a wheelchair full-time.  Jen is also having increased cognitive issues.  There is definitely a lot of inflammation present which could be indicative of her engaged immune system and can account for some of the function loss, but there is also definite tumor growth as well.  The only positive is that Jen hasn't had any seizures for several weeks now.

The last month has been difficult emotionally as well as physically.  On Jen's bad days it has been extremely difficult just being able to transfer Jen from a wheelchair onto a toilet or into the car.  Some days are better than others, but as I mentioned in the last post the overall trend has been downward.  I don't think a day has gone by without Jen crying over her inability to perform basic tasks.  The experience has been pretty heartbreaking.

If we suspend all further treatment, Jen probably has about 6 weeks left.  If we continue pursuing treatments, we may be able to add a couple of months to that.

In spite of everything, Jen wants to keep fighting.  There have been 2 occasions where after a particularly challenging event, Jen has broken down and said that she was done fighting.  But, afterwards when she was less frustrated, she decided she wants to keep fighting.  Every other discussion about whether to continue or not, Jen has been resolute in her wanting to keep fighting.  One of my greatest concerns is that with Jen's declining speech and cognitive issues, she may reach a point where she no longer wishes to continue and I may not be able to understand this desire.  But for now, I am confidant in her resolution.

So what is left to try.  We are essentially throwing the kitchen sink at the cancer.  On Friday, Jen had another infusion of Avastin as well as Keytruda (two drugs Jen has taken before and I have discussed in this blog previously).  She will do another round of Car-T on Monday, and we are hopefully adding in a drug to target an EGF mutation that exists in Jen's tumor.  This drug has already been denied by Jen's insurance and we are waiting on a request to the drug company to cover the drug under compassionate use.  This was a process I started about a month ago.  There is also the possibility of further radiation.  As much as we would like to resume Optune, it isn't possible at the moment with Jen's recent surgery and skin issues.  In fact there is about a 20% chance that her sutures may reopen a little from the Avastin.  This would create a further complication that could lead to infection.  As I mentioned earlier, doing all of this will probably only buy a little extra time, but there is always a (very unlikely) chance that the combination of things Jen is trying will produce an exceptional effect that could buy a little more time.

As always, please keep Jen in your thoughts, prayers, and hearts.

Jen's status

Jen has now completed the second injection of Car-T cells.

Jen has continued to decline, but it is uncertain at this point whether this is due to disease progression or the immune response from the Car-T therapy, or a little of both.  The Car-T is designed to heighten the body's own immune response in order to attack the cancer cells.  This process creates quite a bit of inflammation in the brain that does indeed worsen symptoms.  Each day following the Car-T injections she is at her worst, but then does improve gradually over the next several days.  But, her overall trajectory has also been downward, though it is hard to tell if she is significantly worse than she was before starting the immune therapy a week and a half ago due to the inflammation - we won't really know until her next scan about 2 weeks from now.

Jen is at her worst on the first day following the Car-T.  She is completely wheelchair bound and has almost no use of her right side.  Each day afterwards she has also had a slight fever of about 100 as well as some headaches (all completely expected).  She bounced back quicker from the first injection than the most recent one, but the second dose was 5 times greater than the first injection (50 million Car-T cells vs 10 million).  Each day following the second dose she has shown improvement and today she was able to use a walker with me beside her using a gait belt to prevent falls.  Her right arm and hand has really declined in strength and function.  She needs assistance using the bathroom and getting dressed.  Whether or not she will show any improvement once all the inflammation has decreased is uncertain.  A lot will depend on whether the therapy is doing anything positive to fight the cancer.  Time will tell.

Jen's speech has also declined.  It often takes me a while to understand what she is asking for and many times she gives up.  As you can imagine this has been extremely frustrating for both of us.  Understandably, Jen has been pretty emotional about her loss of function.  The steroids she is on do create emotional swings, but even without those on board, I know this is all extremely difficult for her (and me as well) and her inability to express herself has been far more of a loss than any physical decline.

She has begun receiving in home speech, physical and occupational therapy which will hopefully help, but currently we are limited in our availability as we are always gone for medical appointments.  So, getting in more than 1 visit from each during the week has been challenging.

Jen does have some issues with short term memory and some cognition, but she mostly seems to know what she wants to say, but just has difficulty expressing herself.  She can still read, and she was even able to read and understand a foreign subtitled film that she watched recently.  But her ability to text, email, or speak is severely limited.  We have been experimenting with some speech board apps, but really need to customize them for her use.  Hopefully this will be a tool that will help her be able to communicate better.

One of the things her neuro-oncologist told us over 4 years ago that has stuck with me is that it is amazing how people's bar for what is an acceptable quality of life will constantly lower as declines occur.  We have both found this to be a true and sobering reality.  If Jen had been told a year ago that her level of function would be where it is today, I'm not sure she would have wished to continue fighting.  But, even with all the challenges, she still wants to fight and hang on to whatever she can.  After all, the alternative is even worse.  Jen is still able to enjoy music and movies and just being able to hang out together.  She hasn't had a lot of social interaction in the past several weeks due to our intense schedule currently, but hopefully she will be able to do more if our schedule ever lightens up.

She is due for her 3rd injection next Monday.  This will be her final injection per the trial.  She will have her next scans the following Monday, but we won't meet with the doctor to discuss until that Wednesday 10/10.  If the therapy shows signs of working, Jen has enough Car-T cells left for another injection which may occur as a single injection or be divided up into 2 or more.  The best use of this final dose will be a discussion with her doctor at that time.

Please continue to keep Jen in your thoughts and prayers.  We are both truly appreciative as well to all of our friends who have stepped up to help during this difficult time.  Thank you.

Prepping for Car-T injection

Cleaning the area for the injections.

Car-T injections directly into the brain.

Jen has two injection sites. One is directly into the area of the tumor and
the second is directly into a ventricle within the brain to help spread
the cells throughout the brain.

1 to 2 days following the injection - Jen has 15 cc of Cerebral fluid removed.

Awaiting first Car-T Infusion

We are at City of Hope awaiting the first infusion of the Car-T cells.

Jen was released from acute rehab on Saturday morning.  We could have kept her there until Wednesday, but with the Car-T schedule, Sunday being a down day and the fact that they don't do rehab on the day of discharge, Jen would have stayed 4 additional nights and received only 1 additional day of therapy.  Due to this, her doctor felt that Jen should be discharged on Saturday.

We are still trying to coordinate outpatient therapy for Jen.  I asked weeks ago (and several times throughout the past several weeks) about setting up outpatient neuro PT, OT, and Speech therapy - but was told we had to wait until she was being discharged from acute rehab.  Now every place we have tried is booked for at least a month.  We are trying to bridge the time with in home therapy - we will have to see how that works out.

Jen's use of her right hand has significantly worsened again, and is now probably as bad as it has been.  Her balance is still good, but her speech and communication ability continue to be a struggle.  Jen is often frustrated and emotional over her limitations, but she is hopeful for the trial.  We just hope it works and that we can at least prevent any further declines in function.  Please continue to keep Jen in your thoughts and prayers.

Getting ready to start Car-T

Jen has been doing well with rehab and will most likely remain at Huntington through next Wednesday, although she may come home as early as Saturday - it's still up in the air.  Her mobility and balance have improved.  From my observations, I believe the dexterity in her right hand has improved over where it was at pre-surgery, but Jen disagrees.  Her seizure activity has also lessened significantly.

Jen's communication ability still continues to be her greatest challenge.  She is often frustrated with her difficulty in conveying her thoughts or wishes, but with patience she is usually able to get at what she wants to say.  Sometimes though she will just say nevermind or forget about it.  Her short term memory and cognition are also a frequent issue.  In spite of all of Jen's challenges, she still has a lot of fight in her and is excited and hopeful about beginning the Car-T injections.

This Saturday she will be having a bunch of scans- MRI, CT, & PET.  This is all part of the trial protocol in order to establish a baseline prior to the Car-T.   Jen will receive her first injection on Monday of next week.  She will continue to receive injections every Monday for an additional 3-4 weeks with additional labs and follow ups every Wednesday & Friday.  She will also need to continue with outpatient physical, speech & occupational therapy - so our schedule will be pretty packed for the next month.  We are both hoping that this will be a major success for Jen - we probably won't know for a little while.

If you would like to visit Jen while she is still at Huntington,  she is in room 4114 of the  LaVina Bldg at Huntington Hospital 100 W California Blvd.  Please schedule any visits through me.   As always, please continue to keep Jen in your thoughts and prayers.

Acute Rehab

Jen was transferred to Acute Rehab yesterday afternoon.   She is at Huntington Hospital in Pasadena.  Here she will be receiving much more intense physical, occupational, & speech therapy.  Her room will be changing so I am not sure of her room # yet.  She can receive visitors in the evenings and over the weekends starting in the afternoon.   If you wish to visit, please contact me to arrange.

On the road to recovery

What a difference a day makes.  Jen is doing much better.   Yesterday afternoon she gave me cause for concern when she really seemed to take a dip, but by the time the doctor came by 20 minutes later she had already bounced back.  The doctor thought she was doing well.  Apparently the swelling post surgery usually peaks about 3 days afterwards and the doctors expect that she may have peaks and valleys for the next several days.

Jen is also experiencing some side effects from the high doses of steroids she is on.  She has some increased irritability and erratic mood swings - which are common from the steroids, although even that seems to be much better today.   On a positive side, in spite of the steroids which raise glucose levels a lot, due to Jen's diet, her glucose levels have been remarkably good.  Four years ago after Jen's biopsy, the hospital had to constantly chase the steroids with insulin in order to keep her glucose in check.  Now, even on massive doses of steroids her levels are great.  The nurses are all amazed by it and keep inquiring about her Keto diet.

Jen is walking about with a walker and we are getting her up and about for brief walks throughout the day.  Her balance is improving as well as her speech.  Jen finally got the bandages removed from her head and everything looks to be healing well.  With the bandages off Jen was also finally able to put her glasses back on and see!  Last night on Jen's birthday we were able to watch a movie together.

Due to the holiday weekend, she probably won't get transferred to acute rehab until at least Tuesday.  Jen is feeling up to having visitors now.  We welcome anyone on either Sunday or Monday between 2-8 pm.  She is at City of Hope in Duarte.  She is in room 4133 in the west wing of the Helford Bldg.

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.

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!

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.

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.


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.






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.






Ravens

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 …






Tumbled

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.

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.