Announcement for Jen's Memorial Service

Jen's memorial service is scheduled for Thursday, January 24th at 12pm at Placerita Canyon State Park.  The address is 19152 Placerita Canyon Rd, Newhall, CA 91321.  Everyone is welcome.  If you know someone that would be interested in attending but may not be following this blog, please spread the word.

The park is outdoors and dress will be casual.  The  memorial service will be held in one of the picnic areas that we have reserved and there will be lunch following for those who wish to hang out a little.

I realize that this is on a weekday and may be difficult for many to attend and if you are unable I understand.  This location is a public park though and it tends to get crowded on weekends.  Due to the fact that it is outdoors, the memorial will also be weather dependent.  Once we get to the 7 day forecast, I should know whether or not we will need to delay the service for a week.

Please - no flowers.  I will post some links before the service where donations can be made in Jen's name.

Jen and I had many talks over the years as to her final wishes.  Jen wanted to have a party to celebrate her life. As I knew it would be too difficult for me to do so soon, we agreed that there would be a memorial service soon after her passing and the party would be done within the first year.  Jen chose Placerita Canyon because it was everything she loved about living out here.  Jen and I used to hike one of the trails there semi regularly for many years.  As to the party - Jen's birthday this year falls on a Saturday.  I can't think of a more appropriate time to celebrate her life.  Mark your calendars now for Saturday, August 31, 2019.

I thought I should re-post 4 photos from this blog.  These were taken in 2015 while Jen & I were hiking in Placerita Canyon.

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

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.

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.

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.

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.

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.

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.

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.