Awaiting Jen's next scan tomorrow

Jen's next scan is tomorrow.  The days really do seem to fly by.  Jen has been discharged from Physical Therapy, but continues to do her workouts at home.  She has really become refocused and disciplined about it.  She realizes there is a good possibility that she may be in for more surgery this year and wants to be as strong as possible to enable a speedy recovery.  Overall Jen has been doing pretty well.  The chemo continues to wipe her out for about a week each month, and her overall energy since resuming the chemo last August has declined, much like it did during her first year of chemo back in 2015.  The chemo affects her platelets, hemoglobin, and white cell counts and it will take a while for these to come back once she stops taking the chemo.  Jen continues to have memory issues that seem to have gotten a little worse in the last 6 months, but her doctors think this may have more to do with the radiation than the cancer itself.  Unfortunately, since Jen has multiple inoperable tumors, she also received a greater area of radiation than someone who has only a single resected tumor.  As always, please continue to keep Jen in your thoughts and prayers.  I will post the scan results tomorrow or Friday.

We had our annual Oscar party this past Sunday.  Of course we failed to take a single picture.  We had a lot of fun and managed to see a lot of films leading up to it.  We also managed to get to see 2 concerts - one of our favorite things to do together.

The Musical Box

Jen and I at Gogol Bordello

Gogol Bordello

Stable Scan!!!

Jen's scan today was stable!!!  The area that grew a few months ago when Jen became recurrent does in fact look as if it has gotten a little smaller.   As long as Jen's blood work holds, she will resume chemo on Tuesday.  This will be her 7th cycle since her recurrence.  There are no standards for how long to continue with the chemo at this point.  She may have already derived all the benefits from resuming, or maybe not.  There really are no absolute rules at this stage as there are for an initial diagnosis.  Both Jen and I as well as her doctor from UCLA believe we should continue for at least a few more cycles if Jen continues to remain stable.  I'm not exactly sure why, but it is our gut instinct.  Thanks again for all the prayers and support!

A quick update prior to Jen's scan later today

     It has now been a couple of weeks since Jen has recovered from her last round of chemo.  The bouts of sickness have also passed and it has been good to have a few more active weeks.  Allergy season seems to be hitting Jen a little earlier this year thanks to the unseasonably warm weather.  We are still trying to find some relief that she can tolerate.  Jen did have another small seizure about a week and a half ago.  Nothing to be alarmed about as she has 1 or 2 about every 2 months.  I wish they didn't happen, but the alternative of increasing meds with debilitating side effects is less appealing to Jen and myself.  Jen also had a fall in the kitchen about 2 weeks ago.  She is okay and has fallen before, but this is always concerning.  She had had a long day and probably over did it a little.  We do try to be constantly aware of Jen's risk for falls and are constantly taking precautions as her balance isn't always the best especially when she becomes fatigued.
     On a more positive note,  Jen has resumed physical therapy after a long break due to sickness/chemo/sickness/chemo.  Her therapist was surprised to see that after all her inactivity that she hadn't lost any progress.  She is only going about once a week as we need to be judicious with her PT as the year has just begun, but she has also resumed regular workouts at home.
     Jen's next scan is later today.  As always please keep Jen in your thoughts and prayers.  I will post the news about her scan hopefully this evening.
     As I mentioned, we have been a little more active again.  Below are pictures from 2 concerts that Jen and I attended.




Watching The White Buffalo perform on stage

 

Jen posing with Terry at the show

Jen & I with Rich and Terry

 

Jen posing with Jake Smith (front man for The White Buffalo)

Watching Mia Doi Todd

 

Jen & I at Mia's show

 

Stable Scan!!!

Jen’s scan today was stable!!!  She took her last dose of antibiotic yesterday and seems to be on the mend.  If her blood work holds she will resume chemo on Tuesday.  Thanks again for all the prayers and well wishes.  This is a great way to bring in the new year!

Awaiting Jen's next scan and recovering from a second flu

On my last post I mentioned that we were hoping Jen's sickness would improve so that she could resume chemo on time.  Fortunately, she recovered enough to begin the chemo on schedule.  After recovering from the chemo, Jen unfortunately got sick again.  She seems to finally be on the mend.  She did start a round of antibiotics, which we have been hesitant to do since antibiotics can weaken the immune system, especially as her illness was most likely viral.  But if her sickness had continued to progress and it was or became bacterial, she wouldn't be able to start her next cycle of chemo on time.
     Jen has pretty much been housebound for about a month now between the two illnesses and the chemo.  Other than some doctors appointments and blood draws, I think Jen got out of the house only three times.  On Christmas we did drive around for a little while to look at some houses lit up.  One of our neighbors had even driven to the snow and brought back a truck full of it to spread on their front yard.  It of course didn't last for more than a day.  We also saw the new Star Wars and managed to attend 1 concert.  In the audience for the concert was one of Jen's favorite musicians - Lucinda Williams.  I took a picture of the two of them and Jen and she shared an amazing very prolonged hug that lasted a few minutes.
     Jen is definitely hoping to be through with being sick for a while, even though she will hopefully be starting another round of chemo next week.  Jen's next scan is this Thursday.  As always, please keep Jen in your thoughts and prayers as we hope for good results.  We both hope everyone had a great time over the holidays and wish everyone a happy New Year!

Chuck Prophet on stage

 

Jen with Chuck Prophet after the show

Jen with Lucinda Williams

Another Stable Scan!!!

Jen’s scan today was stable!!!  There is still this one little finger like appendage in the new growth (from August) that had concerned Jen’s doctor a couple of months ago.  It does not appear to have changed since then though, but still bears watching.  There are other areas of the newer growth however that do appear as if they may have shrunk a little.

Jen is scheduled to resume chemo on Tuesday if her blood levels hold.  Jen has also come down with a cold or flu and has been pretty out of it since yesterday.  We are trying to give her as much rest as possible so that she can hopefully beat this sickness soon.  If she is still sick next week it could possibly delay her ability to resume the chemo on time.

Next week Jen also has appointments with wound care at UCLA for her scalp irritation and Cedars for a follow up with her Neuro Oncologist there.

Thanks again for all the thoughts and prayers and we wish everyone all the best for the holidays.

Another Update

Jen has completed another round of chemo and her next scan is this Thursday.  She has been doing good for the most part.  Jen did have a couple of bad days following a pair of minor seizures last week, but she seems to have rebounded since then.  It's been about 2 months since Jen previously had a seizure.  This is about her average and they usually come in 2s.  They always give us a little pause and increased anxiety going into a scan, but since they have been ongoing for 3 years, we try to not read too much into them, but a little extra concern is inevitable.

We finally visited City of Hope.  We have been working with them since Jen's first recurrence in August and it took this long to make sure Jen was a candidate for a trial they are conducting.  Jen is now officially in the queue.  There are presently no openings until about June, so we hope she remains stable and can still qualify when we get to the head of the line.  This is an interesting trial that uses a type of immunotherapy known as CAR-T cell therapy.  They also have a stem cell trial that we are in consideration for as well (still need to run a few tests to see if Jen is a candidate).  These are trials for a reason - there are no a guarantees of anything, but they are two of the more interesting approaches out there and ones that Jen is not immediately disqualified for due to her multifocality.  Here is a link to info about the CAR-T trial for those who are interested in learning more (note the tab on the left specific to brain cancer as well):

https://www.cityofhope.org/research/car-t-cell-therapy?gclid=EAIaIQobChMIl_-z48-D2AIVDy5pCh1PTQaaEAAYASAAEgJUbPD_BwE&gclsrc=aw.ds

Tomorrow Jen begins attending physical therapy again to continue working on her overall balance and strength.  Please keep us in your thoughts and prayers as Jen goes for her next scan this Thursday.  I will keep you posted.

We had a great Thanksgiving which we shared with a few close friends (forgot to get pictures).  We also had a really enjoyable visit from two of our nomadic friends on their journey south for the winter.  And of course we got to see a couple of concerts as well.  Pictures are below.

With Tim and Matt at the Elbow show

Elbow

Jerry Lee Lewis!

Jen and I at Jerry Lee

The Killer himself

Jerry Lee joined onstage by Kris Kristofferson



Hanging out with Paul & Mary

With Kathy and Tim for a performance of the Brandenburg Concertos

The Brandenburg Concertos by Bach are a particular favorite of Jen's

Stable Scan!!

Jen's scan today was stable!!! Thank you for all the well wishes and prayers.  We certainly have something to be thankful for this Thanksgiving.

Jen's Walking Warriors Raises $4,150

Jen's Walking Warriors raised $4,150 towards brain cancer research!  The event raised almost $85,000!

Thank you so much to everyone that participated.  We had several people show up the day of the event who signed up to walk.  Including Jen, we had 12 people walking for her team and we even had a few friends show up just to cheer us on and show their solidarity.  It was a pleasantly cool day by the beach and the walk definitely was a great inspiration for Jen.

We would also like to thank everyone that sponsored Jen's team.  Your generous donations are truly appreciated and meaningful.  Hopefully, the money raised will contribute to a cure in the near future.

Jen's next scan is this Thursday.  Please continue to send all your prayers and positive support her way.  I will keep you updated.

Below are some pictures/video from the event:



Jen's Walking Warriors!

On stage with other survivors.



Jen with her plaque given to the survivors.

Jen's walk update

Thank you to everyone who has signed up to walk and/or sponsor Jen's Walking Warriors!

Online registration has closed, but it is not too late to walk with Jen.  Anyone interested can still sign up even on the day of the walk.  You just need to show up a little earlier to make sure you get registered.

Sponsoring the team though, can still be done online.  So this is a final call for anyone who has not yet given to take the time to please do so.  All proceeds go to fund brain tumor research and your donation is tax deductible.

Jen is excited and looking forward to seeing and walking with all those who are joining her this Sunday.  Even if you are unable to walk, you are welcome to attend the event and cheer Jen on!

The link again is:
https://www.wizathon.com/heroesofhoperace/teams/3627

Walking for a cure!

Jen has now completed her 3rd cycle of chemo and is just beginning to recover from the effects.  We have been weighing whether or not to go back east in order to make appointments with Johns Hopkins, NIH and Duke.  The entire clinical process has been nothing but frustrating and we seem to be encountering endless road blocks.  We now have to rule out NIH at this stage as they require 20 slides of brain tumor tissue to be sent to them before they will even entertain scheduling an appointment.  Jen only has about 30 slides available.  To send 2/3 just to secure an appointment for an institution that may not even have a single trial for which Jen is eligible is a non starter.  This would prevent her from pursuing any other possible trials due to not having any tissue left to send.  Johns Hopkins is also not looking ideal at this stage.  Jen's multifocality really does eliminate her from most trials, but we are still investigating and have been working closely with many local institutions as well.

Since we are not going back east at this time, Jen is ready for her next challenge.  I mentioned on this blog a little while ago that Jen was going to be participating in a walk for brain cancer research.  I haven't mentioned it in a little while because we weren't sure Jen would be able to participate.  But, Jen is resolved to take this on.

We welcome anyone in the LA area to join us for this walk on Sunday, November 12.  It is at Dockweiler beach near Marina Del Rey.  It is a glorious level & easy walk along the beach area.  The walk is 5 kilometers or about 3 miles.  It starts early in the morning and should be done before noon.  The info for the walk is on the event details tab at the top of the webpage linked at the bottom of this post.

For those unable to walk, you can still help by sponsoring Jen's team: Jen's Walking Warriors.  Every dollar raised goes directly to research.  The funds we raise will be targeted towards UCLA specifically.  UCLA is Jen's primary care facility and they really do great work there.  Anything you can give is appreciated – no amount is too small.

If you do wish to join us, please sign up.  You can also donate as well if you are able to.

Jen is looking forward to taking this on.  She sees it both as a personal challenge and a chance to give back as well.  There are many advances being made every day and the dollars we raise today will help to find a cure for tomorrow.

Will you please walk with Jen or sponsor her team: Jen’s Walking Warriors.  The link is below.

https://www.wizathon.com/heroesofhoperace/teams/3627

An uncertain scan

Jen’s latest scan is a little ambiguous.  Her doctor at UCLA believes that there is a slight growth happening in the recently expanded area.  This was not a definitive call.  In fact, the radiology report reads as stable.  Her doctor showed us an area of the tumor that looks as if it is growing in a new direction.  We were both able to see what he did, but again it is slight.  He expects that the next scan will most likely show it to be bigger yet again.  He did tell us that it is possible that what we are seeing is remodeling of the tumor.  It is also possible that the next scan will be stable – there is a lot of uncertainty with these things and again MRIs are not an exact representation of what is going on.

Even if Jen wanted to pursue a clinical at this stage, she probably would be ineligible as growth from this scan would be a debatable thing.  Jen will resume the chemo on Tuesday night.  If there is indeed growth, the chemo is working somewhat or the growth would be more pronounced.  If the next scan is more indicative of growth, than we will need to change course.  In the meantime we will keep plugging away at potential clinical trials so that if that happens we can hopefully be ready with a few options.

Obviously this is not the best news, but it is also not the worst.  Hopefully, the next scan will be more positive and this scan will turn out to just be an imprecise picture of what may be going on.

We are still waiting on the results from the FMRI that Jen had done 10 days ago.

As to Jen’s decrease in balance and increased fatigue, her UCLA doctor does not believe that her symptoms would be from any new growth as it is so minimal if it does exist.  He also believes it is unlikely that these would be delayed deficits from the earlier growth.  He feels that it is most likely from Jen’s allergies and the various remedies that she pursued for relief.  Jen has been off of any allergy medicine for about 4 days now and I would say that there has been an improvement.

I will keep you posted as we learn more.  As always thank you for the continued support and please keep Jen in you hearts and prayers.