New Year. Fresh Resolve!

I have been stable for almost 28 months!  I am very fortunate to have come this far and I intend to keep fighting and remain strong. Thank you for all of your continued love and prayers and positive vibes. Positive energy is something very important to keeping the stress levels down, and healing energy up.

Of course, it is a lot of work to try and stay fit and healthy otherwise. I work out as much on my own as I can, but I could be doing better than once or twice a week.  My ketogenic diet, and the difficulty of measuring each ingredient to the tenth of a gram, makes it easy to fall into a food rut. Eating the same foods every day is surely not getting me a variety of nutrional foods, but so far I've selected the meals that are easy to make and good for grab-and-go. This year I charge myself with making some new recipes to get me eating a variety of cancer-fighting foods that also have few ingredients, and are easy to make in batches. Thank you, Jenna for cooking all of my soups.  I couldn't do this without you!

As all of you know from Randy's posts, we may have come to a crossroads. Whether to stay on or get off of the Novocure/Optune device for a brief while to let the burns and blisters heal, and then resume treatment once my scalp has healed. This healing process could take 2-6 weeks; we just don't know. The wound care specialists don't even have a clue as to how long it might take to heal the very fragile skin on my scalp. My particular cancer can double in size in two weeks' time, so I'm not a fan of going off of the device.  No matter how painful these scalp wounds can be, I vote to stay the course unless the wounds worsen. Then, I will have no choice but to take a break.  I'd rather bite down hard against the pain, bide my time, and wait for one of the clinicals to prove out to be a real cure.  I think that science is developing a better understanding of all cancers, including GBM, at the genetic level.  Hopefully, I can remain stable long enough for one of the ongoing trials to prove effective.

Last year, I wrote that I was going to post more here. Well, that didn't exactly happen, but it does not mean I haven't been writing.  In fact, I went back to writing poetry again.  It taxes my brain, and yet exercises it too. It takes me longer to complete a poem these days, through the fog of radiation, and haze of medications. Here is one that I believe to be completed.  I don't know who said this, but it is true:  "It takes two people to make a piece of art. One to make the art; the other to hit the artist over the head to make him/her realize that it is finished."

Ravens

As the storm cloud rises, so do the ravens.
From the valley floor they come;
they surf the air, like great waves,
swinging wing to tail, making crazy 8s in the sky.
They are black chaos.
Their cacophony fills the gloaming
with some impending magic.

The first fat splats of rain hit the ground.
The ravens settle on rooftops, in treetops,
on fence posts, on lamp posts,
and they are silent.
Then suddenly, and without a sound,
they scatter and are gone.

But here, in the mystical minds of men
our superstitions are stirring
and we are silent.
We hold our bated breaths
and are waiting...
waiting...
waiting...

Another stable scan!!!

Jen's scan was stable!!!  This marks 28 months since diagnosis.  Thank you to everybody for the well wishes and prayers.  We both wish everyone a joyful time over the  Holidays.

Awaiting next week's scan & Music Party 2016

Apologies for any confusion from my last post.  Jen is still presently using the Optune device.  Although, I indicated we would probably have to abandon the Optune device due to the sores on Jen's head, I mentioned we were exploring additional options.  Since my last post we have had a few visits with a wound care specialist out of UCLA.  We are using a new and very expensive bandaging, (of course not covered by insurance) during the array changes.  These new bandages are a dermal matrix using sheep gut and collagen.  It is still too early to tell if they are making a difference or not, but we have been using them for a little over a month now.  We may still need to take a vacation from the Optune device, but we are doing everything we can to prevent this.  I will let you know if we need to stop its use or if the new wound care appears to be making a difference.

Unfortunately, there has been some sad news from the brain tumor support group we have been attending for a while now.  One of the members isn't doing very well and may be near the end stages and another who seemed to be doing so well, has just recently had a recurrence in his scan.  Both of these men also have glioblastoma.  It is a sobering reminder of just how devastating this disease is and how fast it can take a turn for the worse.

Jen seems to be doing well, although she continues to feel her speech, level of confusion, and memory have gotten a little worse.  Again, this could all be just a result of the radiation.  Her next scan is on Thursday.  Hopefully, we will receive great news in time for Christmas.  As always, we appreciate all the well wishes and prayers for a good scan.  If you find it in your heart, please also extend a prayer towards the 2 members of our support group I mentioned previously.

Earlier in the week we followed up with the pediatric neurology department which monitors Jen's diet.  It was pretty routine, but we need to check in regularly to make sure everything is okay with Jen's bloodwork as they monitor for various risks associated with the diet.

Come January, Jen will move to Medicare.  Her present insurance will become a secondary insurance.  Because of the way the two insurances interact, we won't receive any additional benefit, but it will cost us more as we are now responsible for 2 premiums and 2 deductibles and of course there will probably be added complications with billing as we must coordinate 2 insurance coverages.  We will have to see what the new year brings, hopefully it will work smoother than I anticipate.  Moving to Medicare is not a choice, but a requirement after 2 years on disability.

In November, we had the 10th anniversary of our Music Party.  For those of you unaware, the concept is simple - everyone contributes several personal song choices.  During the party, everyone's songs are put into a massive playlist and the songs are randomly shuffled.  We also compile the entire playlist onto a disc for everyone to take away so that they can revisit the songs later.  We spent 3 days at a house in Temecula with several close friends as we again celebrated our shared love of music and friendship.



The cover of this year's MP3 disc.

Again, I neglected to take many pictures during the weekend, but here is one someone took the day after the big party.  Jen and Paul are still getting down.

As I did last year, I have included links to Jen's song picks for those of you who want to get to know her a little better.  Many of you may not realize this, but growing up, Jen was heavily into the punk music scene.  Her picks this year celebrate music that influenced her when she was around 16 and regularly going into Washington DC to the punk clubs.

Jen as a young punk!

Here are Jen's music picks for 2016.

1. Fear - Beef Bologna: https://www.youtube.com/watch?v=dO5KoBHto80
2. Dead Kennedys - California Uber Alles: https://www.youtube.com/watch?v=GoA_zY6tqQw
3. Black Flag - TV Party: https://www.youtube.com/watch?v=B3yUQFluNq0
4. Suicidal Tendencies - Institutionalized: https://www.youtube.com/watch?v=Hof4EESpe_k
5. The Clash - Know Your Rights: https://www.youtube.com/watch?v=5lfInFVPkQs
6. Bad Brains - Sacred Love: https://www.youtube.com/watch?v=DnswpHvAqLc
7. Sex Pistols - Anarchy in The U.K.: https://www.youtube.com/watch?v=qbmWs6Jf5dc
8. Suzanne Vega - Small Blue Thing: https://www.youtube.com/watch?v=tPkhoZzsono
9. The Smiths - How Soon Is Now?: https://www.youtube.com/watch?v=hnpILIIo9ek
10. Echo & The Bunnymen - The Killing Moon: https://www.youtube.com/watch?v=LWz0JC7afNQ
11. The Stooges - I Wanna Be Your Dog: https://www.youtube.com/watch?v=BJIqnXTqg8I

The Good, The Bad, & The Ugly

First the Good.  Actually it's pretty great!  Jen had her most recent scan yesterday and it was again stable!!!  This marks 26 months since diagnosis and over 25 months progression free.  A huge deal.  We were a little worried heading into it as Jen has had a few issues which I will get to shortly, but first in sticking with the theme I will share the other good things from the past 2 months.

The big news is we went on our longest vacation to date and actually traveled across the country to Virginia where we both grew up.  We visited with my family and got a chance to revisit both of our old stomping grounds.  We got to catch up with our old college friends and were even able to attend one of our friend's 50th birthday bashes.  We are indeed getting old.  While back in Virginia, Jen wanted to go to the Maryland Renaissance Festival which was taking place while we were visiting.  Jen and I had been a few times previously when we lived back there and she wanted to go again.  It was a big day with a lot of walking.  Unfortunately, while visiting we neglected to take any pictures.  I do however have a video of Jen and I riding an elephant at the Ren Faire that one of our friends shot.

The trip took a lot of planning and coordinating in order to make it happen.  Nothing is spontaneous with us anymore.  Lots of medical supplies and food preparation equipment had to be shipped ahead of time and the first 2 days were spent in the kitchen cooking meals for Jen's Keto diet.  We traveled with 5 pieces of luggage and 3 of them were full of nothing but medical supplies/equipment/medication.  We fantasize about taking a trip to somewhere we have never been, but money is extremely tight and we realize that this may not be an easy endeavor.  In traveling to Virginia, we at least had the benefit of being able to coordinate and ship things, as well as have my Father shop ahead of time for a lot of the things Jen would need while out there.  Thanks again to my Mom and Dad who have been a great source of support throughout this ordeal.  For those of you unaware, Jen's parents both passed away a while ago, but she does keep in contact with her sister who is planning to visit with us in the very near future.

We even managed to hold up the returning flight for about an hour.  When the attendants asked Jen to stow her backpack in the overhead bin, she replied that she couldn't as it was attached to her.  This caused much consternation and back and forth with the airline, pilots, and attendants.  This occurred even though the device is FAA approved and I had called ahead to inform them of our situation and we had no issues flying back east on the same airline.  Eventually they cleared her and fortunately we caught a great tailwind and only arrived about 20 minutes late.

And of course we also took in a couple of concerts.  We saw ELO at the Bowl as well as Jim James in Ventura.  Jen and I both thought that ELO was perhaps the best visual experience we have ever seen at the Bowl next to Dark Side of the Moon.  The concert was really great.

ELO at the Hollywood Bowl

 

Now for the Bad.  Unfortunately Jen has also had 2 seizures this month (both mild).  The last one was about 17 days ago.  We realize the stress of planning and going on the vacation was a lot for Jen and may have contributed, but we will need to be alert and may need to increase her medication.  Jen has also been having increased difficulty in speaking and with memory issues.  When she speaks she still sounds about the same to me, but she feels that it is harder for her to come up with the words at times.  This is exacerbated anytime she is feeling tired or stressed.  As the cancer has remained stable this is most likely a result of the radiation.  In fact at her last scan we also compared her non contrast MRI with one from a year ago and you could visibly see that the area of necrosis (radiation damage) has continued to increase over the past year even though she hasn't had radiation treatment for over 2 years.  And this damage may continue to increase even more over the next several years.  Jen has become more forgetful and more easily confused.  In spite of this, I still think Jen is doing remarkably well.  She continues to work out regularly and is wanting to take on new challenges all the time.

And now, the ugly.  The sores on Jen's head from the Optune device continue to be a problem.  Her skin is breaking down and it looks like we are going to have no choice but to stop using the machine until her skin heals.  This will probably take about 2-4 weeks.  We are extremely nervous about taking a break from something that may be greatly contributing to Jen's continued stability.  She is still on it presently, as we are exploring additional options, but in all likelihood, she will be stopping it's use soon.  Obviously, this will cause even greater worry as her next scan approaches.  Right now, her next scan is scheduled for Dec 22, just in time for a great Christmas gift.

Another Stable Scan!!!

Jen's scan yesterday was again stable!  There are even a few areas of expression that do appear as if they may be a little smaller.  This marks over 2 years since diagnosis and almost 2 years progression free for Jen!

Unfortunately, the blisters and sores from the Optune device seem to be getting progressively worse and aren't healing as quickly as they used to.  We are trying more frequent changes to see if the reaction is from the glue breaking down over time (a suggestion from the device manufacturer).  If we aren't able to improve the situation we may have no choice but to temporarily suspend its use so that Jen's scalp can properly heal.  If we do this she would probably have to discontinue it for 1-2 weeks.  This is obviously something that we wish to avoid as we don't know what role the device is playing in keeping the cancer at bay.  Hopefully we can see some improvement without having to stop using it.



Happy Birthday Jen!

Today is Jen's birthday!   Tomorrow Jen has her next scan.  I will keep you posted.

August 26th - Two years since diagnosis!

Today marks Jen's two year anniversary since diagnosis.  This is a day that only 17% of glioblastoma patients even reach.  When she was first diagnosed the doctors didn't give me much confidence that Jen would still be alive today.  In fact I was told she probably had about a year.  But the doctors didn't know Jen!  I don't believe that Jen is still doing so well because of luck.  I believe it's due to her hard work, determination, and the sacrifices she has chosen to make.

 

Next Wednesday is Jen's Birthday and on Thursday she has her next scan.  I can't think of a better gift for her and I  than another good scan.  Please keep her in your thoughts and prayers for next week.

As some of you know,  I had surgery this week to remove my gallbladder.  I am doing well and I appreciate the extra support to make sure Jen was taken care of.  Thanks especially to Matt and Jen (a friend who not only shares Jen's name, but also the same birthday next week).  Thank you both!

Meanwhile,  after waiting for a year, the FDA finally approved the second generation of the Optune device Jen has been using since December 2014.  This has been a wonderful improvement over the first generation.  It is less than half the weight and half the size.  So much less of a burden.  Once I recover from my surgery we are looking forward to hiking with the new device.

 

Jen getting trained on the new device.

Jen wearing the new lighter device.

And we also managed to take in two concerts at the Greek Theatre.  We saw Ryan Adams  (one of Jen's favorite singer/songwriters) and the Alabama Shakes (one of her favorite newer artists).  We had a great time together at both shows.

 

Ryan Adams - NOT Bryan Adams

Our first shows at the Greek in several years.

 

Alabama Shakes - man can she sing!

 

Jen gives a speech about her fight against Brain Cancer

For the past few months Jen had been giving a lot of thought to the idea of preparing a speech on brain cancer and her experiences.  About a month ago she decided to pursue it and thought her old employer would be a great place to first give the presentation.  Her old company, Deutsch, has been very supportive of Jen and they often have speakers present to the company on a variety of topics.  Deutsch was enthusiastic about having Jen speak before the company and Jen began working on her speech.  She learned to use PowerPoint and spent several weeks working on what she wanted to say.  She wanted the speech to educate people as well as to inspire.  With his permission, I would like to share the memo that the CEO for the entire North American operation of Deutsch advertising wrote about Jen's upcoming speech.

Friends,

Do you know Jen Miller? If you don’t, you need to. Jen has been part of our print production family at Deutsch since January of 2006, and she is one of the truest and most awesome examples of how incredible our people are.

For those of you who haven’t had the fortune of knowing our dear friend’s story, Jen has been fighting Glioblastoma Multiforme, an aggressive form of brain cancer, for two damn years. And she’s been going at it every day with strength and fortitude that is completely and totally inspiring. To get to know more about Jen and her story, take a look at her blog: http://jenscancerfight.blogspot.com/ 

On Monday afternoon at 4pm, Jen has offered to come into the office and speak to the agency for our July Town Hall. Please take the time out of your day to spend time with this incredible warrior of a woman. We will all be better for it.

Mike

Mike Sheldon
CEO, North America

Mike has said it far better than I can.  I hope his letter begins to show you how much Jen is loved and respected in her work and what a great environment her company has.  Jen gave the presentation last week before a packed house.  Jen was amazing and I am so proud of all the work she put into it and the awesome presentation she delivered.  She crushed it!

Below is a video of Jen's presentation.  Unfortunately, the phone that was being used ran out of space.  Another was made available, but some of the presentation was lost.  There are 2 gaps during the speech totaling about a minute.  Due to time constraints, Jen quickly glossed over a few of the slides and talking points.  You can read the entire text from the full PowerPoint below the video if you choose.

 

Below is the PDF of Jen's PowerPoint presentation.

 

Jen's Seizures & a few photos

Since I last posted, Jen did have one more small seizure and one aura.  We also saw a seizure specialist at UCLA.  I realize I probably haven't gone into much detail about Jen's seizures in the past so I thought I would do so now.

Jen had been seizure free for almost a year.  Then, starting in the end of May of this year she had two minor ones and then the most recent one was in the beginning of July along with one additional aura.  Jen still has had only one Grand Mal seizure.  This occurred in the very beginning and is what led to the search for her diagnosis.  A Grand Mal seizure (also referred to as Tonic-Clonic) is what everyone thinks of.  It involves involuntary violent muscle convulsion and the loss of consciousness.

All of Jens's seizures since then would be what are classified as Simple Partial Motor seizures.  She is fully awake and aware of the seizure.  If you were in a room with her you might not even be aware it was happening unless it was one of her more pronounced episodes.  Typically for Jen, these smaller seizures involve the twitching of her mouth and sometimes the inability to speak.  Imagine a fish hook was in the corner of your mouth and someone kept tugging on it - this is what Jen's look like. 

Jen also will sometimes get what is known as an aura.  An aura is a perceptual disturbance that reflects the initial seizure discharge.  They are like pre-seizures which also serve as a warning sign.  Not all seizures are preceded by auras and not all auras lead to a seizure.  During one of Jen's auras she will feel that something isn't quite right.  She will feel "buzzy", like electricity is flowing through her brain.  She also can feel dizzy and often has a sense of dread come over her.  When she has an aura we try to get Jen to a safe position in case she were to have a full seizure.  Sometimes, stopping any external stimuli (television, people talking, turning off lights) will help Jen to relax, close her eyes and focus on her breathing.  We have found that sometimes this will help her to not go into a full seizure.

Jen's seizure specialist believes her most recent activity could be linked to the fact that earlier this year she began using an estrogen cream to help with her menopause symptoms.  Even though, she informed her gynecologist that she had brain cancer and was on seizure medication, we were told that using this would be completely safe.  Well, it turns out that it can decrease the effectiveness of seizure medications.  She has since stopped using it, and has felt over all much better.  She has not had another incident in over a month and we have not had to increase any of her seizure medications. 

Jen's seizures are being triggered by the tumors in her head.  If they grow, the seizures could get worse.  If they were to ever shrink, perhaps we could reduce her meds, but it is possible they would still occur due to damage already done by the tumors.  In addition to her medication, Jen's Ketogenic diet is also playing a role in helping to control her seizures.  In fact, the Keto diet has been used for this very purpose for decades to help control children's seizures.  Jen also uses CBD oil - a non psychoactive compound found in marijuana that has been shown to reduce seizures.  It has also been shown to have an effect on tumor growth in several European studies.  It is still hard to even study it in this country due to the onerous federal regulations that have been placed on it.



As many of you know, we live very close to a recent massive wildfire that occurred in the Los Angeles area.  Although our home was never threatened, there were many days where we were surrounded by smoke.  At times it looked like it was snowing due to the ash falling from the sky.  I have included a picture taken from our front yard soon after the fire began.

And of course, being summer, Jen and I saw a few shows.  We saw Peter Gabriel with Sting at the Hollywood Bowl with over a dozen of our friends.  Most recently we discovered this amazing venue that has been in LA for 14 years without us even being aware.  It is an intimate outdoor amphitheater that holds maybe 200 people.  The venue and the show were pretty amazing.  The band we saw was Dengue Fever.

Jen continues to do well.  Just living life - enjoying the days.

Another Stable Scan!!!

Jen's scan from earlier today was again stable!  This marks 22 and 1/2 months since diagnosis.

I know it is easy to feel lulled into complacency with Jen's continual stable scans.  The reality is she is doing extremely well considering that she is multi focal, inoperable, IDH1 negative (a type of mutation in glioblastoma with a much more positive outcome), and was unable to tolerate the standard dose of chemo used to treat her cancer.  On the plus side though, Jen is methylated (a predictor for better outcomes with glioblastoma), she is under 50, has a positive attitude and she is a fighter surrounded by people who love her.  She is also extremely disciplined with her diet regimen and is also willing to use the Optune (arrays on her head) which a lot of patients have difficulty adjusting to.

Jen's next scan is scheduled for August 25.  At 7 weeks out this will be her longest period between MRIs. It will also be the day before her 2 year anniversary since diagnosis.  Keep the prayers and well wishes flowing!  Thank you!

Update and a few pictures

First the good news - Jen has not had any further seizures since the last one in the end of May.  We will be seeing a seizure specialist at UCLA in the next couple of weeks.  If she continues to be seizure free we will resist any increases to her medication, but it will be good to have a plan if she has any further seizures in the near future.  On Thursday of this week, Jen will be having her next MRI.  I will post the results as soon as we are able.  As always please keep Jen in your thoughts and prayers as we continue to hope for good results.  We also have an appointment coming up in the next few weeks with Jen's dietician and nutritionist at UCLA to touch base regarding Jen's Ketogenic diet.

Jen and I have also found a great Brain Tumor Support Group for both patients & caregivers.  This one meets in Santa Monica and unlike the earlier one I attended that I mentioned on this blog previously, this one has been a very positive experience.  We have gotten to know some great people who are on a similar journey.  The meetings give everyone a chance to talk about issues with others who have a definite understanding of the challenges that face someone with brain cancer.  This group also has been great for discussions on treatment options and the sharing of info.

It has been a busy month.  We saw Paul Simon at the Hollywood Bowl, went wine tasting with several friends, went to see fireworks on the 4th, and even managed to get in a beach day.  We had a friend from out of town, Kristina and her son Luke, stay with us for a few days as well.  It was great seeing them and spending time doing a few LA things together.

The last time Jen was at Vasquez she held her cane above her head.  Now - No cane.

Jen with Kristina and Luke

Many people have indicated that they were having trouble finding where to subscribe by email to this blog.  I have revised the layout a little and made the subscribe by email a little more prominent.  It is directly below Jen's picture on the right hand side.  If you do subscribe you will be notified by email when there has been an update to the blog.

The medical device that Jen has been using for the last year and a half - Optune (the arrays she wears on her head) is not presently covered by Medicare.  Almost all of the major insurance companies now cover this life saving device, but not Medicare.  Come this January, Jen will be forced to go on Medicare and we do worry about what this means for her.  There is a petition that you can fill out to encourage Medicare to cover this device.  Please take a moment to fill it out.  Although not a cure, it could help to extend someone's life.  I have include the link below:

https://virtualtrials.com/activism.cfm

Another Stable Scan!!

This one is quite the sigh of relief.  Jen's scan was stable!  It has now been a little over 21 months since diagnosis.  As far as the seizures, Jen has not had any further since Monday.  Jen's neuro oncologist believes that with the stable scan her seizures speak more to her seizure medications than anything else.  He said that perhaps her current medication regime is just enough to keep her from seizing, and any slight variation or stress might be enough to cause a seizure.  Perhaps she has built up a slight tolerance to her present medication level.  In any case we are hoping to not have to increase her medication as the seizure meds definitely increase fatigue and dull the thoughts a little.  Obviously if she has another we will probably not have a choice.

We have made another appointment with the seizure specialty department at UCLA, but unfortunately they don't have any appointments for over 2 months.  This is something we went through at the very beginning before we had a diagnosis.  We tried to get appointments with specialists and were on 3 month waiting lists, even though Jen was having uncontrolled seizures several times a day.  The only way we were able to accelerate anything was through going to the emergency room.  Hopefully we won't need to do this again.

Thank you to everyone who sent well wishes.  We are grateful for all the love and support and extremely thankful that Jen is doing as well as she is.