Thursday, December 6, 2018

Rest in Peace my Love

Jen passed away last night at about 8pm.  I was with her at the time and was fortunate enough to have several friends who were with me by her bedside.  Lisa, Jen L., and Srini - I cannot thank you enough and express how much it meant to me to have you here with me and Jen as she slipped away.

Jen fought this fight with such vigor and with such a positive attitude.  There were of course moments during the fight when Jen was scared, sad, or frustrated, but she was never angry or resentful.  She wanted to keep fighting even as recent as a couple of weeks ago, before she took a significant turn for the worse.  That's how much Jen loved life.  She embraced it fully.  In her final act of giving, Jen has donated her brain to UCLA for research.  This was something that she was adamant about doing almost from the beginning of this journey.  She hoped that if she couldn't beat this cancer then perhaps her death could help with research that could save others down the road.  That is the kind of person Jen was.  I know I'm biased, but she was the most amazing person I have ever known.  I will forever be truly blessed to have had her in my life.  I can't begin to express the grief I feel now.  I will always feel as if a part of me is missing.  Jen was the best part of my life and I am eternally grateful that we had 31 years together.  It will never be enough, I wish we had 31 more.

I will post info about a memorial service on this blog once the details are sorted out.

I also want to share some photos and a quick movie that were sent to me by a friend today.  Some of these are pictures I had never seen.  This is how I want to remember Jen - ever full of life.  If anyone else has any pictures with Jen, please send them to me.  It would mean a lot.

Just hanging out with Srini & Cheryl about a year ago.  Jen loved
music and loved to dance.  When Jen & I first met it was at a
dance club during a mutual friend's birthday party.  I'm being
a goofball here, but usually I would be dancing right with her.

A Christmas Party from 2015

A Tiki party from 2015

A Christmas Party from 2010

From a Port Party we hosted in 2011

Jen's Birthday Party from 2011.  I had live Maryland blue crabs flown in
as a surprise.  One of Jen's favorite foods.
At lunch for Srini's Birthday in 2012

New Year's Eve 2015

Our Wedding Day!

At my Birthday party in 2015

Tuesday, December 4, 2018

Approaching the end

Jen had been responsive and eating/drinking through this past Sunday.  She was visited by many people during this last week and was able to interact with most.  I want to thank everyone who took the time to visit with Jen, and I know from my moments with her that she was happy to see everyone who made it out.  Yesterday, however, I became unable to get any food/water into Jen and by yesterday afternoon she had become completely unresponsive.  She is resting peacefully and probably has a day or two left.  I will post details for a memorial service here when the time comes.

Thursday, November 29, 2018

A quick update

As I previously mentioned Jen has been with hospice now since Monday.  She sleeps for most of the time, but she does have many moments throughout the day where she is alert and responds.  We have had many visitors over the last few days and I encourage anyone who wishes to visit to just reach out to me and you are welcome to come by.  If you don't know how to contact me, you can always comment either to this post or in the messages of love and support.  Let me know that you wish to reach me and I will try and contact you directly.

Many of Jen's visitors have been lucky enough to catch her in a moment where she is alert.  In her best moments she will smile, say hello, talk a little, and even reciprocate a hug.

She has been able to drink enough fluids, and eat most of 3 meals a day.  It takes a while to get through a meal, but I have enjoyed spending the time at her bedside while she gets through each meal.  We have been listening to the playlist from our wedding, and reception.  Next up we will start listening to the playlists from our many music parties we have enjoyed.  Jen says she is enjoying the music, and sometimes I see pretty amazing responses.  Last night, when Cab Calloway's song "Minnie the Moocher" came on, her eyes lit up, she gave a big smile and mouthed the words to the chorus.  "Hi-dee hi-dee hi-dee hi, Whoa-a-a-a-ah, He-e-e-e-e-e-e-y, Oh-oh-oh-oh". This morning when Peggy Lee's "Fever" came on she began doing the finger snaps from the song. She has responded positively to many other songs as well. It really is precious to see that she still gets some moments of pleasure.

Overall, she doesn't seem to be in any real pain. Whenever she is alert, I always check in with her and she has always indicated that she doesn't have any. This at least is a source of relief. No one can say exactly how long Jen has. Obviously it will probably go pretty quick once she gets to the point where she can't eat anymore. Until then, as long as Jen isn't in any pain and continues to have moments of clarity and a little joy, I am grateful for each day we have. Again, all are welcome to visit - repeat visits are okay as well. Thank you to everyone who has come by and also to everyone who has been helping me along the way.  We are both truly blessed to have so many amazing friends and it is such a comfort to see all the outpouring of love for Jen.

Monday, November 26, 2018

A significant turn for the worse

This is the hardest post I've had to write so far.

Last Wednesday, the day of Jen's infusion appointment, she became extremely lethargic and only semi responsive.  It was a very pronounced decline from even the day before.  Because of the sudden onset, I thought perhaps there was an underlying reason such as an infection.  Jen did have an elevated heart rate and a low grade fever.  After speaking with her doctor, we went to the ER and rescheduled the infusion.

The ER did a complete blood work up, but didn't really find anything.  They put her on an antibiotic as a precaution and gave her some fluids.  She did seem to perk up a little and they did discharge her that evening.  The next day, while trying to have Thanksgiving dinner with a few friends, Jen again began to tank.  In the last 4 days Jen has been mostly out of it with limited moments of seeming clarity.  It has also become extremely difficult for Jen to take her pills.  She has trouble swallowing.  This also has presented challenges to Jen eating regularly.  Due to the fact that for the past couple of days Jen has still had an off and on fever - reaching about 100°, I was holding out hope that she might still have an underlying condition from which she could rebound and perhaps have a little more time, but it's looking like that is now unlikely.

Hospice has now been called in and they will be here later today.  Jen probably has 2 weeks at best left.  As time goes on she will probably become more and more unaware.  Jen has fought a long hard battle and is in the top 5% of Glioblastoma survivors, but unfortunately it seems as if the cancer has finally won.  I'm crying even now as I write this, and I know reading this will affect many of you as well.  God, I Love Jen so much!  I am so deeply heartbroken that it has finally come to this.  If anyone wishes to see Jen, please call and I will arrange for you to see her.  Obviously, sooner is better than later.  I can't promise how aware/awake she will be, but she does still have moments of clarity and hopefully you will be lucky enough to catch her in one of these moments.

Fortunately, Jen did get in a visit for a couple of days with her sister a week ago - before things got as bad as they are now.  I'd like to share a picture of the two of them.

Jen and her sister Robin.

Thursday, November 15, 2018

A Stable Scan and a day out with friends

Jen's scan this time was stable!  It is hard to know exactly what is going on, especially with Jen on 4 biological medications.  The doctors still don't know exactly how to fully interpret changes with immunotherapy drugs.  Jen's tumor at this time is fairly sizable and there could be changes happening within it that are hard to determine.  Nevertheless, this is obviously good news.  We're not sure how long it will continue to hold at bay but we are grateful for every day we get.

Jen is back on the Tagrisso and has been for 8 days now.  The rash appeared last time on day 11, so we will have to see whether or not we need to stop it again for a while.  The UTI seems to have cleared up and a urinalysis was done on Tuesday and showed no signs of an infection.  The pressure sore continues to be an issue.  It doesn't seem to be getting any worse, but I'm not sure it's getting any better either.  Will continue to treat and evaluate.  I should also mention that the sling on Jen's arm in the pictures below isn't from a broken arm.  This is the arm that she has lost use of and supporting it helps to minimize subluxation (dislocation) of her shoulder.

Jen's high school friend Brian, left this morning.  Yesterday, our friend Dash was also back from Spain for another day and we were able to hang out a little longer this time.  The four of us went to Griffith Observatory yesterday.  Jen has been wanting to go back there for a while now and the timing finally worked out.  We couldn't have picked a nicer day.  The weather was amazing and the sky was exceedingly clear.  We even took in a show at the planetarium.  Jen enjoyed the day and the visits with friends tremendously.  Next week Jen's sister is coming for a visit as well.  I know I have requests from people for visits that we haven't yet been able to accommodate, but as much as Jen enjoys the visits, they do take a lot out of her as well.  I need to always schedule a couple of down days between any activity.  If you do wish to see Jen, please call me and we will set something up as soon as we are able.

Hanging out with Brian & Dash at Griffith

A view of downtown LA from Griffith

The day was clear enough to see the ocean.

A great panoramic shot that Brian took.

Jen with Dash and Brian and the Hollywood sign behind them.

Tesla coil in action. 

Jen taking in the exhibits.

A final pose before leaving.

Monday, November 12, 2018

On the eve of Jen's next scan

Jen had her final Car-T injection a week ago.  Like last time,  her reaction was much stronger combined with the Keytruda.  The night after the injection Jen was riding a high fever for most of the night.  I was taking her temperature every 10-20 minutes all through the night and constantly applying ice packs to reduce her fever which got as high as 104.1.  By the morning her fever was mostly gone.  She was extremely out of it the next day but we did manage to keep her out of the hospital  this time.  Despite the higher fever, she rebounded a little quicker this time.

Unfortunately,  by the end of last week, Jen got worse again.  We believe it was due to a likely UTI.  Of course it hit hard on a Friday of a holiday weekend.   Fortunately,  her doctor was on call and he  prescribed an antibiotic.  After a few days Jen has again rebounded and seems to have mostly recovered now.  We have also been dealing with a really bad pressure sore which developed on Jen's foot from wearing her AFO (the orthotic device worn on her drop foot).  Wounds are tough to heal when someone is taking Avastin - another drug Jen is on.  Hopefully the treatment regimen we are following will help it to heal quickly.

Jen's next scan is tomorrow.  We will see whether the combination of therapies we have been using has had any effect.

Meanwhile, one of Jen's old high school friends has been visiting since yesterday.  Jen has been enjoying spending time with  him as well.  He's a big music guy and we have been spending a significant amount of time listening to music together.

Please continue to keep Jen in your thoughts and prayers.  I will try and post tomorrow or Wednesday with news of Jen's scan.

Sunday, November 4, 2018

A long overdue update

Apologies for the delay in getting out an update.

Jen had her last Car-T injection about 3 weeks ago.  The next day, following the draining of cerebral fluid, and after getting Jen home, she had an extreme reaction.  Jen became completely unresponsive.  We returned to City of Hope where Jen was hospitalized for about a day.  The latest round really knocked her for a loop.  She has always been out of it for several days following the injections, but this was obviously much more extreme.  Basically, the reaction was due to her immune system being in hyper drive and due to all of the inflammation that this causes.  We're not sure exactly why this latest round was worse for her - the dosing was actually a little bit lower than the previous one.  It could be due to a cumulative effect or the addition of the Keytruda and Avastin.  As we are now outside the parameters of the Car-T trial and the additional doses are optional, we are able to pursue combination therapies.  Of course, while in the hospital, Jen's sodium levels again were an issue.  The doctors have now tripled the amount of sodium tablets that Jen takes.

Jen has since recovered, but still struggles with all of the additional deficits I have discussed previously.  She just had another infusion of Keytruda and Avastin yesterday and is due for her final Car-T injection this Monday.  This will be her final Car-T because all of the T-cells that were harvested will have been used up after this final one.  Hopefully this last dose won't affect her as severely as the previous one did.

Jen also did receive and start the EGFR drug I mentioned previously that we were trying to get directly from the drug company as her insurance won't cover it.  This drug - Tagrisso, targets a specific genetic marker that is present in Jen's cancer.  Unfortunately after taking it for about 10 days, Jen developed a pretty dramatic rash over her torso, neck, and head.  This is a common side effect for patients taking this drug.  Many people continue taking the drug after the rash appears and there is some evidence in other cancers that those who have this side effect may have a better response from the drug.  However, due to Jen's upcoming Car-T on Monday, we have temporarily suspended the drug for at least a few days.  Jen will most likely resume it after she recovers from the Car-T.

We also had a brief urgent care visit 2 days ago after Jen had a fall in the bathroom.  She hit her head and had a few lacerations on her delicate scalp.  Fortunately, nothing requiring stitches.  She has also been having a great deal of pain in her drop foot lately.  We had her foot x-ray'd while at the urgent care just to make sure there was no hairline fracture and they didn't see anything.  Not sure why the sudden pain in the foot.  Perhaps due to the Avastin, although previously her joint pain has never affected her foot.  Will keep an eye on it.

Jen's next scan will be on the 13th of November.  We will see if any of the combination therapies are having any effect.  Overall, Jen has improved slightly in the last 2 weeks, but this could all be due to decreasing the inflammation and may not be indicative of the cancer at all.  Jen unfortunately lost an entire week with at home PT, OT, and speech because after her 24 hour stay in the hospital, all of her orders were automatically nullified by the insurance.  She needed to get entirely new orders, followed by an entirely new evaluation.  This is apparently standard procedure.  Of course no one mentioned this to us until the week after Jen recovered from the Car-T and we tried to book visits.

I also want to especially thank all the friends who have stepped up to really help out.  There have been many, and we both feel especially blessed with all the help offered and given.  Thanks especially to Lisa, Jen L., Kathy, Fred, Joe, & Mike.  You have all helped so much.  We cannot begin to thank you enough.

Fortunately, we have also had a brief respite of almost 2 weeks without any medical appointments and we have been able to take advantage of this a little.  About 2 weeks ago we finally got out and about for our first night outside the house that was non medical in well over 2 months.  We went to a concert that we had gotten tickets to long ago for one of Jen's favorite artists.  It was something that Jen was not wanting to do at first, but finally decided to go.  We went and Jen had a great time.  I think it was good for her to finally be able to get out of the house/hospital and do something social.

Jen & I with Tom at the Nick Cave concert

Then, we were able to use some rewards points that Jen had accumulated for Hilton while she was doing business travel and stay for a couple of nights at a hotel right on the beach.  We had a room with a balcony looking directly over the ocean.  When Jen's previous boss heard we were going to get away for a couple of nights, he got Deutsch to give her a visa gift card for the trip which he brought while coming to visit with Jen.  Using that very generous gift we were able to stay an extra night.  Thank you John & Deutsch!  Having a couple of days by the ocean was amazing and a well needed break away from all the cancer crap.  We spent time in the pool, by the fire pits, and of course, many hours on the beach.  We both had a great time.

Jen enjoying her morning coffee on the balcony

On the beach!

Then, to end the week we had a couple of visitors from out of town.  We saw Dash, who was in all the way from Spain (neglected to get any pictures), and then, the last two days we spent visiting with two of our close friends from college days.

Hanging out with Steve & Christina.

Next week, I expect Jen will be pretty out of it until near the end of the week following the Car-T.  After next week, we have an upcoming out of town visit from one of Jen's oldest high school friends.  Anyone wishing to visit with Jen, please reach out to me and we will try and set something up.

Saturday, October 13, 2018

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.

Friday, September 28, 2018

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.

Monday, September 17, 2018

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.

Wednesday, September 12, 2018

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.

Thursday, September 6, 2018

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.

Saturday, September 1, 2018

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.

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.

Tuesday, July 31, 2018

A Brief Update while awaiting more info

Jen has rebounded from the chemo but is still having pain from the last Avastin infusion 2 1/2 weeks ago.  Her platelet count has been okay so far, but it may still drop more in the next 1-2 weeks.  This Thursday will be Jen's next scan as well as a full day at City of Hope.  We hope the chemo has held the cancer at bay - we will know Thursday.  If there is some growth, then we hope she is still able to qualify for the trial and the surgery.  I will let you know how everything goes.

For those of you that have not seen or talked to Jen in a little while, she has had some increased difficulties over the last few months.  She had two recurrences within the last 3 months and one of the cruelest aspects of brain cancer is that every time there is growth, the deficits are increased as well.  Jen has more difficulty with her balance.  She uses a cane almost all the time now and does need more help with some tasks.  She also has more difficulty communicating.  She can still do it, but writing takes even longer and requires a lot more concentration.  When Jen speaks, she often has a harder time finding the words that she wishes to use.  She can still carry on a conversation, but sometimes it is a little more taxing for her and takes her a little longer to get out what she wants to say.  I can't say whether things are any worse since starting the chemo though, so we are hopeful that the scan will be good.

Jen also had another seizure this past Friday.  It was much more like her usual small ones, but the mouth twitching was a little more exaggerated and it did last for about 3 1/2 minutes, so about twice as long as her typical ones.

One thing we did recently that Jen really wanted to do was to go to the movie theater and see the Rocky Horror Picture Show again.  This is something that we haven't done in over 30 years, but did do together on an early date back in Virginia.  We gathered up a few friends and went to the midnight showing 2 Saturdays ago.  Jen had a blast and we all really loved going to see it again.  Over 40 years later, it still sold out.  This last Sunday, Jen's old boss John invited us over for dinner at his place.  Jen and John have always been close and he has really been a good friend.  Thank you John and Andre for having us over, Jen and I both really enjoyed hanging out.

Jen & John
As always, please keep Jen in your thoughts and prayers for her upcoming scan this Thursday as well as the upcoming surgery.  I will try and post an update on Thursday or Friday.

Tuesday, July 17, 2018

Swinging for the Fences

Jen is still recovering from her latest chemo, but doing okay.  We have come up with a game plan for Jen's next step.  Regardless of whether or not the chemo is working, we have decided not to schedule the next cycle.  Instead, we are moving forward with the CAR-T trial.  Hopefully the chemo is working and can either shrink the tumor or at least prevent it from growing prior to surgery.  Jen will be having surgery on either the 14th or 21st of August.  They will try and debulk as much of the actively growing tumor as possible and put in shunts for drug infusion.  After the surgery, Jen will need to go to an acute rehab center again and then begin receiving the CAR-T infusions sometime around September 4th.  The surgery will be done as an awake procedure to try and preserve as much of Jen's language ability as possible.

Needless to say this is a risky approach, but also probably Jen's last chance to really try for something novel.  The surgery could really leave Jen with some additional disabilities, but if the cancer continues to progress, she will also have increased impairments or worse.  As I mentioned we will be stopping the present chemo/Avastin regimen.  But if it does work, we will always be able to start it up again if the CAR-T fails.

Jen and I are both scared about the upcoming surgery, but we also realize that this is probably her best shot at any potentially meaningful treatment.  Jen will also be a part of the next group that will receive an even higher dose of the regimen than any patient has received before.  Hopefully there will be no issues with toxicity, and hopefully the increased dose will prove to be even more effective.

It's hard to give up on a course of treatment before we know if it is even working, but if it does work and we wait for it to fail, the chance that the timing will work out for Jen's involvement in the trial is probably slim.  Also, if the tumor grows too much, she will no longer even be a candidate for the trial.  I will update you as things get closer and as we learn more.  Please continue to keep Jen in your prayers.

Friday, July 13, 2018

Walking a tightrope

First, let me get the sodium level out of the way.  Jen's last level that she had to come back to the hospital to have taken was within the range they were looking for.  So that seems to have stabilized and we still have no idea why it got a little out of whack.

Jen began a new chemo this morning.  She is now on carboplatin which is a platinum based chemotherapy.  She is doing this in combination with Avastin, which was given at a lower dose to hopefully reduce the side effects.  This new chemo is done as an infusion.

We are still pursuing the CAR-T trial at City of Hope as well as trying to keep a few other options available.  The reality is we are getting down to the options with smaller success rates.  Trials of course are always a gamble as the effects aren't known yet, but as I have mentioned before, if there is a cure out there presently (or even a treatment option that buys significant time) it is in the trials taking place.  So much of being able to undergo a trial really depends on timing.  Hopefully the timing will work for Jen.  Based on her latest scan she is still eligible for the CAR-T and Neuro Stem Cell trial.  As I mentioned earlier, the Neuro Stem trial has only had a few patients enrolled so far and the results have been less than spectacular.  Even so, individual results can vary widely and they are still in a dose escalating phase and maybe Jen would have better luck with it.  Having said that, our preference has always been for the CAR-T.  Since both would involve surgery, and having surgery twice could do more damage than benefit, we are prioritizing the CAR-T while still keeping the other one as a viable option.

We don't know whether the current chemo/Avastin combo will work at all and we definitely are concerned about Jen's blood counts plummeting.  If this happens, she would also be ineligible for the trial.  Hopefully, even if it doesn't work fully it will at least slow the growth enough so that she can still be a candidate for the trial.  It could also work really well.  This is a small chance, but it is a possibility.

We are also still pursuing the off book use of an immunotherapy drug I mentioned in the last post.

Meanwhile, right now, Jen is resting.  We are preparing for a potentially rough week ahead, but hopefully the side effects will be minimal.

We really are walking a tightrope trying to keep as many options viable as possible.  At some point we may have no choice but to let some of them go, but as long as we can do this dance and preserve some other options we will continue to do so.

Emotionally this has been hard on both Jen and myself.  We understand the odds and they are not great, but Jen is still determined to fight for as long as she can.  Hopefully, we will find something that works and buys Jen some more precious time.

Thanks again to everyone who has offered and given help during this time.  Please keep sending positive thoughts and prayers our way.  We are both so appreciative of all the love Jen has inspired.  I will keep you posted with any new developments.

I would like to end this by posting a few recent pictures of Jen.  I am posting a photo taken yesterday of Jen holding some flowers that were given to her by her old company Deutsch (thank you) as well as 2 photos taken of Jen on a day trip we took about 2 weeks ago that included a visit to Jen's favorite winery.

Wednesday, July 11, 2018

Jen's status and next steps

We were able to get Jen released from the hospital last night on the condition that we returned today for another blood draw to check her sodium level.  We got the results which I believe are okay, but we still haven't heard back as to whether or not it was within the range they were looking for.   The sodium level is still something that no doctor  (and we asked many) was able to elucidate exactly how to control.  The thing that they were concerned about is the level fluctuations over a 24hr time frame and over a 48hr time frame.  We asked how we can make sure that her sodium level doesn't get low again and they were not able to provide any concrete answers.  Apparently one's sodium level has almost nothing to do with salt in the diet.  It is actually more associated with water consumption.  We asked for a guideline as to how much water Jen should consume and we kept getting conflicting and inconsistent answers.  Jen drinks about 2 litres of water a day, which they thought sounded good.  She has been on a regimented diet and had her blood levels checked regularly over the last 4 years and never had an issue before, so the takeaway is she doesn't need to change anything and who knows why it happened.  Science.

The treatment options for her cancer are not really ideal.  We haven't heard whether she still qualifies for the Car-T trial based on her most recent scan.  However, the trial accrues in cohorts of 3 patients and the current patients must complete 3 cycles of T-cells and an evaluation for any toxicities before they can begin patients on the next dose level.  Jennifer would be in the next group of patients and T-cells cannot commence until September 4th at the earliest.  Jen can't wait 2 months for treatment - glioblastoma is way too aggressive for that kind of delay.

There aren't really any immediately accessible trials that she would qualify for other than the Neuro stem cell trial at City of Hope.  We are waiting to see if that is a viable option, but the last results we heard about involving patients in the trial weren't very promising.

There is an immunotherapy drug that has been FDA approved for other cancers that some glioblastoma patients are trying off label.  We are exploring this as well, but this will take some time.  We must submit the drug for approval to her insurance company - which will deny it as it is not FDA approved for her cancer.  Then we can appeal to the drug manufacturer to essentially give us the drug.  We could purchase it on our own, but we don't exactly have $500,000 dollars to do this.  We have already begun this entire process,  but again probably can't wait for it now, but it may work out after trying something else.

The best immediate option is probably a different type of chemotherapy.   This is risky as Jen had trouble with her platelets on her previous chemo which is gentler than the other options.  We could tank her blood counts permanently in a non-recoverable way.  On top of this, even though she has failed on Avastin the standard approach is to continue with it while adding chemo.  They don't really understand why - but a small subgroup of patients who failed on Avastin and even chemo have gone for long periods of time when continuing to use it.  Her joint pain though is pretty horific.  Only about 10% of patients have the pain Jen is experiencing, and her level of pain is in the top 1% of those patients.  If we go down this path we will probably lower her dose of Avastin.  They used to use a lower dose with success and there really isn't any valid evidence that the higher dose is any more effective.  Even if we lower her dose she may still have the pain, but maybe it will be lessened or perhaps even go away.  But she may have to contend with the Avastin pain at the same time she would be experiencing the effects of the chemo.  It could be a miserable experience for her.

With this last approach, we could also resume using Optune.  However, her scalp still hasn't really healed much and we would probably be looking at skin breakdown pretty soon and have to stop.  We may try it in a much more limited way.

As you can see, there really are no great options.  Having said this, her doctors would not recommend going through these treatments with all the discomfort and serious ramifications if they didn't believe there was a chance that they may work.  Jen and I have also had pretty frank discussions that include discontinuing treatments, enjoying food again and trying to perhaps take a vacation and just enjoy what time she has left.  But after discussing, she's not there yet.  Jen still loves life and if there is a chance, than she wants to fight for it.  Hopefully we can find something that works and hopefully it won't be too uncomfortable for her.  As you can imagine, this has all been rather difficult for both of us. We hope and pray for guidance and a lot of luck. Please continue to keep us in your thoughts and prayers.