Thursday, December 14, 2017

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.

Monday, December 11, 2017

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):

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

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

Thursday, November 16, 2017

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.

Monday, November 13, 2017

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.

Friday, November 10, 2017

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:

Wednesday, November 1, 2017

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.

Friday, October 20, 2017

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.

Wednesday, October 18, 2017

Another Update

Well it has been another busy month.  Jen completed her second round of chemo and has since recovered from that, but she was sick briefly and has had a real problem with her allergies for the last several weeks.  We have now tried 4 different types of allergy medicines for Jen and they either didn't work or had really bad side effects for her.  Jen has had a rough couple of weeks.  She fell 4 times in the span of a week and a half and generally has been more tired and a little more confused at times.  Her doctor at Cedars told us that it could be delayed deficits due to the growth that Jen had before her last stable scan.  It could also be a sign of continued growth, or he also felt that it could very likely be the result of her being sick and her allergies flaring up as well as the allergy meds that she has been taking.  We will know more this week.  Jen's next scan is this Thursday.  Jen also had an FMRI which we should get the results of on Thursday as well.  An FMRI (Functional MRI) is done to see if surgery is even a possibility for Jen.
My parents visited with us for 9 days during the end of September.  They were literally on the plane in the air headed to see us when we got the results of Jen's last scan.  We had debated whether or not to postpone their visit due to the timing, but Jen felt that she wanted to visit with them regardless of the scan results. Jen has known my parents for 30 years now and Jen considers them family.  Fortunately, the scan news was good and we had a very pleasant visit along with a huge sigh of relief.
We seem to again have endless medical appointments - something that had lessened while Jen was stable and off chemo.  A lot of second and third opinions as well as blood draws and explorations for clinical trials.  Jen has also been working with an orthotics company trying to get fitted for a device to help control her right knee which has become prone to hyper extension.  This is a problem that she has always had to a small degree, but one that has gotten worse in recent months.
Please continue to send all the positive love and support as we hope for good news this Thursday.  I will keep you updated.
Now for some pictures.
My parents

Enjoying a day with my parents.
We also managed to see a couple of shows.
At the Gorillaz show

Catching the spotlight as it washes over the audience
At the Wiltern with Kathy, Lisa, & Earl

On stage at the Wiltern - Joan Baez, Patty Griffin, Steve Earl, Lucinda Williams,
Brandi Carlile & more

Thursday, September 21, 2017

Stable Scan!!!

Jen's scan today was stable!   We are so relieved.  Jen will resume chemo on Tuesday if her blood counts continue to hold.  Her next scan will be in 4 weeks.  Thank you to everyone for all the well wishes, prayers, and support.

Tuesday, September 19, 2017

An update as we await Jen's scan this Thursday

It's been a challenging few weeks.  I really feel continually frustrated with the clinical trial process at every turn.  As I have mentioned previously, due to Jen's multifocal tumor situation, she is ineligible for the vast majority of clinical trials, but it has also been extremely difficult to find out which other available ones she may actually qualify for.  Many institutions won't even consider whether they have anything that you may qualify for until an in person visit takes place.  Obviously this presents challenges if you are looking at options in other states.  Not every institution works this way.  We have been able to do everything remotely for City of Hope - even though they are close to us and we are willing to go there for a visit.  Their tumor review board will be presenting Jen's info to see if she qualifies for anything there.  Cedars currently doesn't have anything.  UCLA - maybe.  Saint Johns - maybe.  I had been working with Johns Hopkins for over a week emailing them all the info they needed, getting scans to them as well as doctors notes, lab work, pathology reports, etc.  Even though, I had explained our situation up front, it wasn't until after getting them everything, that they told us we needed to have an in person appointment before they would even consider whether they might have a trial that Jen would qualify for.  This is ridiculous.  I understand that an in person visit would need to be undertaken for final consideration, but there should certainly be a remote prescreening that can happen before one hops on a plane, spends precious resources and more importantly precious time chasing down what may be a complete non starter.  We are also looking into other institutions like NIH, Duke and San Francisco.  We shall see.  The rules on whether an individual qualifies are fuzzy at best and can come down to the individual interpretations of Jen's scans by which ever doctor is undertaking the trial.  Some doctors are very conservative and others will fudge things a bit if possible.  Again - something that is impossible to know until the final review.

As I previously discussed, Jen did resume chemo.  She is definitely past the worst of it and we will have to see how her platelets respond this time.  Jen's next scan is this Thursday.  Hopefully there will be evidence that the chemo is at least holding everything at bay.  This is our first best hope.  If not, then we will have to see about clinicals.

We have had follow up appointments at Cedars as well as two surgical consults - one at UCLA and one at Cedars.  We have also spoken to our Neuro Oncologist at UCLA several times in the last few weeks as well.  So what more have we learned?  Unfortunately not much that is good.  We are having an FMRI (Functional MRI) done so that we can see if surgery is even an option.  An FMRI is similar to a conventional MRI except that it is done with greater resolution and also relies on the interaction of the patient in order to map what is actually going on in their brain.  Because so much of Jen's tumor is in the area that affects speech and language, we need to see the current state of her brain.  Jen may have already developed new pathways for her language.  This may explain why we didn't see much of a clinical decline despite the increase in tumor size.  The area of new growth may be able to be resected, but if it is still vital for her communication and the complimentary area on the other side of her brain is unable to make the connections due to the tumor, then we may not be able to touch it.  Even if the FMRI shows that the new growth can be removed, it may not be prudent to do so.  Jen would need 6 weeks or more of recovery, during which time the tumor removed could completely come back, or a new area may grow.  After the surgery she really can't do any treatment for a while.  No chemo.  No trials.  No Optune.  Which brings us to the final surgical concern.  The scalp damage on Jen's head from using the Optune device may completely make surgical options too risky to even consider.  The risk of infection could be too great.  In the end, if it is possible, the strongest case for considering surgery may be simply so that there is more of Jen's tumor available to be tested and utilized for possible clinical trials.

So how is Jen doing?  She has not given up and is still fighting.  She did have another mild seizure today, but it has been over a month since her last one and this is not out of the norm.  Her fatigue level seems to be a little worse, but it is hard to tell since she did another course of chemo which tends to wipe her out anyway.  She is also having an increased involuntary snapping back of her right knee when she walks.  We are looking at getting a knee cage to prevent this.  She hasn't had any falls, so that is good news.  Jen has taken up doing the crossword puzzle every day in the LA Times to help keep her verbal skills sharp.

In spite of all that Jen is going though, she still has found the time to do a few things that bring her joy.  Thanks to a very generous gift from our friends Anne & Joe, we were able to attend a performance of Hamilton.  It came about while Jen was on chemo, but she was determined to go.  Jen has been wanting to see it since it came to Broadway.  We both thoroughly enjoyed it.  Thank you again Anne & Joe.  September 8 was also our 10th wedding anniversary.  Jen and I have been married for 10 years, but we have been together for 30.  We managed to get away for a day and went to an Inn right on the beach that is one of our local favorites.  It was thoroughly relaxing and enjoyable.  It was good to be able to (somewhat) put our troubles aside, even if for only a day.  We even managed to get back to the Bowl for a final concert this season.

Please keep Jen in your thoughts and prayers for this Thursday.  I will keep everyone posted.  Now for a few photos.

Here are a few to show how bad Jen's scalp is.  Like everything with brain cancer, the Optune is a bit of a Faustian bargain.

And now for some pictures from some happy days - still trying to enjoy life!

At Hamilton with Anne & Joe

A little fuzzy, but you get the idea.

Our Anniversary!

At the Hollywood Bowl

New Order on stage

Wednesday, August 30, 2017

Trial Tribulations

Last night Jen began a new round of chemotherapy.  Even though resuming chemo was both Jen's and my gut instinct for how to proceed, in reality we didn't have a lot of options.  Since her last scan we have been pursuing the clinical trials that might be open to her.  This process was a lot more problematic than we had believed it would be.

Jen's most recent scan was her first recurrence.  Usually most trials for glioblastoma are targeted for first recurrence with a growing number available as upfront trials (meaning upon diagnosis).  At the time of Jen's initial diagnosis in 2014 there weren't any readily available upfront trials that she was qualified for.  This probably turned out to be a good thing as she was instead able to use the Optune device which we believe has made a difference at least up until now.  Some trials can be undertaken at later recurrences (second, third, etc.).  Each recurrence means growth following another intervention.  Even if the chemo that she is currently on does not slow the growth, she may no longer be considered at first recurrence and may fall under second recurrence.

We tried to focus especially on trials targeting first recurrence as we are presently at a unique opportunity that may not be available again.  As I have previously indicated, Jen is excluded from a sizeable number of trials because she didn't have surgical resection and because she is multi focal (multiple tumor expressions).  Most trials want to have the best chance of success and will often limit themselves to patients who have had resection of a single tumor.

There were still other trials worth pursuing though.  We contacted a wide variety of medical institutions to see what Jen would qualify for.  Most came back with only 1 or no options available to her and many we have yet to hear word from.  Of those we did initially qualify for, many we ruled out simply because the ramp up time would be too long.  Some she probably wouldn't be able to start for weeks or as much as a month.  Glioblastoma is extremely aggressive and we feel that is too long to wait.  Glioblastoma can double in size every 2 weeks.  For a slower growing tumor these options might be worth considering or if Jen didn't have any other options (if she hadn't initially had a good response rate from her chemo).  Others we ruled out because they could be utilized at multiple recurrences or because the methodology was very similar to other trials that have not produced spectacular results.

The final trial we were considering versus chemo was ruled out on Tuesday afternoon because Jen didn't have enough tissue sample to qualify for the trial, even though she was eligible in every other way including possessing a required genetic marker in her tumors.  Whenever  a biopsy or resection is performed the tumor cells are preserved.  This is done for genetic testing as well as to allow for further testing for various clinicals down the road that may request tissue samples.  Someone who has had a resection usually has a fair amount of tissue that is preserved.  The amount is significantly less with a biopsy.  Also a fair amount of what is removed in a biopsy goes towards the initial testing for the cancer itself.  This particular trial wanted a higher than usual amount of tissue for it's research, exceeding the total of Jen's stored tissue.

Other drugs that we were interested in pursuing are not even available for Jen to try, even if we argue for compassionate use.  There are a few that could be pursued off book, but since they are not currently approved for Jen's condition insurance will not pay and we would be looking at tens of thousands a month in medication costs.  All in all, out of all the available options, resuming chemo seems to be her best current option.  Statistically it also should have a higher probability of further helping than any other available treatment.  If there were a readily available first recurrence trial that Jen could have participated in with an imminent start date that had a methodology that we strongly believed in we may have gone that route knowing that chemo could always be resumed if the trial didn't work for Jen.  On the other hand another course of chemo for as long as it may work is probably the option with the best chance for immediate success.  With brain cancer, growth often comes with additional deficits, so our goal isn't just maximum time, but maximum time with the best quality of life.

We obviously hope that the chemo works again for Jen this time.  We want to keep buying as much time as we can, not only so Jen can continue to live a rewarding life, but also so that hopefully new options will become available.  In the meantime, we are also tracking forward with a particular trial out of City of Hope that is extremely interesting in it's approach.  This is one of the trials that can take about a month to begin.  We are hoping to initiate that process and move forward as much as possible so that if the chemo doesn't work we can possibly consider it as an option.  We are also setting up an appointment with a neurosurgeon who is one of the best in the country and has looked at Jen's scans and believes she could remove some of the area of new growth.  This would not be undertaken solely for removal as too much would be left behind to warrant the surgery for it's own sake, but this may be a path necessary to qualify for surgical trials that may become available.

For me personally, this process has been rather frustrating.  Jen had her scan on a Thursday afternoon.  Nothing could even begin in terms of contacts until Friday morning.  Then came the weekend.  Even though Jen's cancer doesn't take the weekend off, all the doctors and medical institutions essentially do other than essential services.  I felt this same lack of inertia when Jen was in intensive rehab and Jen arrived on a Thursday, on Friday she only got evaluated, she received a couple of hours of PT on Saturday, and then nothing again until Monday.  Too much lost time.

I thought we would have a hard time choosing between at least a dozen options and in the end, I felt that we really didn't have many viable choices.  I have heard from several people over the years regarding various trials and people assume that a trial that appears to be working for 1 patient will automatically work for another with the same condition.  This is not actually true and just because there is a trial or a drug that you would like to pursue, you may not be able to.  One of Jen's doctors told us to remember that clinical trials aren't really about helping patients, they exist to answer a question.  Hopefully patients will benefit as well.  The scientific side of me understands and gets this, but as the husband of someone suffering, I don't like it.  I wish there was an easier way for us to get to try a few of the therapies I have been following since Jen got sick that seem to be showing at least some promise.

So what is next?  Jen will be continuing the chemo on a cycle of 5 days on, 23 days off.  We will hopefully be able to keep going with this for the near future.  That is the ideal.  Jen's next scan will be in 3 weeks from tomorrow.  Then we will know if the chemo is having any impact.  If it is at least holding the cancer, we will continue with another chemo cycle, if it does not, hopefully we will have at least a few options worth considering.  In the meantime she is continuing with the Optune and her Ketogenic diet.  Jen has an amazing attitude and I am constantly in awe of her resilience, and the grace with which she has undertaken all that she has been up against.  Her spirit certainly helps to buoy mine.  As always, we welcome all the positive prayers and well wishes that come our way.

Friday, August 25, 2017

Some bad news

We have unfortunately had some bad news with Jen's latest scan from yesterday.  The largest of Jen's tumors has doubled in size since her previous scan.  As you can imagine, this has come as a gut punch to both of us and we are still trying to process everything.  The irony is that we have been worried at various previous scans, but we were both feeling comfortable going into this one.

So what does this mean?  Jen is now considered to have her first recurrence (meaning first sign of new or growing tumors since beginning treatment).  There are not a lot of options for brain cancer patients, but we do have a few to consider.  Option 1 is resuming chemotherapy.  Although we probably won't get the benefit we did from the first round, there is a decent chance that this will buy some additional time.  Option 2 is to pursue a clinical trial.

The world of clinical trials is an interesting one and there are various exclusion and inclusion criteria for each trial available.  The fact that Jen didn't have surgical resection unfortunately rules her out of consideration for quite a few trials, and the fact that she is multi focal rules her out of many more.  But hopefully there are still a few that she is eligible for that we can consider.  Many clinical trials today are also based on the specific genetic markers that may or may not be present in an individual's tumor.  Jen's neuro-oncologist at UCLA is gathering a list and reaching out to the directors of various clinical trials to see what she may be eligible for.  We have asked him to consider trials at any facility, even if it involves significant travel, so he is reaching out to colleagues and researching available trials at other institutions throughout the US.  We will talk again on Monday after he has had a chance to hear back and gather the info.  Unfortunately, we have the weekend to get through or we would know more sooner.  We have also scheduled an appointment with another doctor out of the John Wayne Cancer Institute who has a great reputation, to get a second perspective.  We have also ordered the next round of chemo in case she pursues that option and I have arranged to have it overnighted so that she will have it on hand in case we decide to start on Monday night.

There are 3 phases of clinical trials.  Phase 1 is largely about finding the maximum tolerable dose of the given medicine and determining if it has a negative toxicity.  Obviously there are inherent risks to this.  The polio vaccine trial out of Duke that was featured on 60 minutes is a good example.  In the phase 1 - several patients died from receiving too high of a dose.  They ended up dialing it back for the Phase 2 study.  A Phase 2 study is really about determining efficacy.  Most cancer trials prove to be ineffective, but even then, sometimes a small population within the trial may have positive results.  A Phase 3 study casts a much wider net with more patients involved and usually multiple medical facilities.  Most also introduce a control arm to determine the real effectiveness of a given approach.  This means that you would only have a 50% chance of actually receiving the given therapy.  The other 50% of patients may receive a placebo.

Some of the clinical trials for which Jen may be eligible will require additional surgery.  Although her tumors can't be removed, they might be able to get a large enough section to qualify for various clinical trials.  Obviously any potential trials that require surgery to qualify will have to be weighed against the added risks and possible complications that may result from a second craniotomy.

It is also difficult obtaining a lot of information about ongoing clinical trials to determine which ones might be the most promising.  So it can very much be a crap shoot.  Also, entering a trial can take some time - anywhere from a week to as much as a month before actually beginning treatment.  This must also be weighed as presently Jen's cancer is growing and can grow rapidly.  We want to begin attacking it with something different as soon as possible.  Lastly, if Jen pursues a clinical trial she will have to abandon her use of the Optune device she has been wearing for almost 3 years.  Even though her cancer has grown, it is possible that without being on this device it would have grown even more, and she may still be deriving a benefit from the device.  Also even at first recurrence, continuing with the Optune still has a proven positive effect in buying additional time that may be absent in any given trial.

As I have said, we will hopefully know more on Monday and will be better equipped to make a decision about how to proceed.  The reality is often when considering clinical trials, you are making very serious decisions with very minimal info on the likely results.  On the other hand, if there is a significantly prolonging treatment or even possibly a cure, it does not exist in the current standard of care, but may amongst the existing clinical trials.

Although this is a serious hit, we are trying to take it in stride and remain positive.  Jen is in this fight for the long haul and despite the blow, she is ready for the next round.  Tomorrow marks Jen's 3 year anniversary since diagnosis.  Something that only between 10-20% of glioblastoma patients ever live to see.  Jen has already beaten the odds and she is ready to continue to do so.

Thursday, August 17, 2017

A long overdue update

I know it's been a while since I posted anything and would like to update everyone with how things are going and what Jen and I have been up to.

Jen has had two small seizures since I last posted.  The last one was about 3 weeks ago and the previous one was about a month prior to that.  These were both small and although we would prefer a longer period of seizure free activity this is a great reduction from the cluster that she had around the time of her last scan and we are grateful for that.  Jen has also resumed Physical Therapy.  This isn't due to greatly increased deficits, but there are a few bad habits that Jen has gotten into with her gait as a result of constantly wearing an AFO to correct her drop foot as well as always carrying around a backpack for her Optune device.  We have to always be judicious about how we use her PT, as to not go over the insurance allotment for the year.  This will especially be important if she ever has cause to go back in for surgery as she will need intensive rehab after.  Jen's next scan is coming up on the 24th of this month - only 1 week from today.  This will be the longest period yet between Jen's scans at 10 weeks.  As always, please keep Jen in your thoughts and prayers.

As you are all aware by now, Senator John McCain was recently diagnosed with brain cancer.  What you may not realize is that he also has glioblastoma.  The same type of brain cancer that Jen has.  One of the members of our brain tumor support group forwarded me an article written by a fellow glioblastoma survivor.  He particularly highlighted a couple of sentences from the article that he found especially moving.  I agree and share them with you as well.

"The element often lost amid the high-tech therapy is patient power. It is patients’ actions, knowledge and strength that, in tandem with world-class scientists and supportive public servants, will find a way through. ...  I imagine most people feel a surge of pity for Mr. McCain. I do, too. But I also feel something more powerful: solidarity. I wouldn’t wish membership in this club on anyone, Senator, but now you’re a member, you’ll find the warmest of welcomes."
 The full article can be read here:

As Lindsey Graham said in response to news of John McCain's brain cancer diagnosis. "This disease has never had a more worthy opponent."  I would have to agree, but then again, Lindsey has never met Jen.

A quick reminder to those in the LA area.  Jen is undertaking a walk for brain cancer on Nov. 11th.  We will post details very soon, but in the meantime would like to alert everyone in the area who would like to walk with Jen to keep the date open.  It will be a morning walk and should be finished by early afternoon.

This week also marks 30 years that Jen and I have been together!  We met at a mutual friend's Birthday Party going to a dance club and have been together ever since.  As I have mentioned previously, Jen and I are avid music fans and the summer is the biggest concert season - so we have been to a few shows recently with some of our friends.  We also took a daytrip to go wine tasting and hit the beach.  Now for some pictures.

Our first concert at the Hollywood Bowl this year.  We saw Queen.

At the Queen show with Jen's old boss John and his friend Lynn.

At the Greek theater with Tom.  Seeing one of Jen's favorite artists - Nick Cave.

Nick Cave.

Back to the Bowl for Dudamel conducting Beethoven's Ninth.

Getting away for a day to wine country.

After wine tasting we headed to the beach where Jen & I walked for about 2 miles.
Jen is trying to get ready for the 5K I mentioned earlier.

Alt-J at the Shrine.

Our friend Tim and us at the Alt-J show.

And lastly we caught Steve Earle at the Troubadour this past weekend.

Jen posing with Steve Earle.