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.