A quick update and lots of photos

As I mentioned prior to Jen's last stable scan, Jen had three seizures the week before the scan.  She did have 1 more seizure two days following the scan.  She then went three weeks without any seizures until this last Sunday when she had two more.  They were all small seizures.  Unfortunately, her appointment with her seizure specialist at UCLA was moved (for the second time), so we are now about a month away from being able to get in to see anyone in that department.  Hopefully, she will remain seizure free until then.  Other than the three small seizures since I last blogged, Jen has been doing well.  She has had increasing issues with insomnia which contributes to her fatigue.  Jen doesn't bounce back as quickly as most of us when she has trouble getting a good night's sleep.  Jen's next scan is on June 15th.

I usually try to remind everyone in the beginning of the month that May is Brain Cancer Awareness Month - Go Gray for May!  Sorry for just now getting to this - it is still May though.  There will be about 80,000 new diagnoses of Brain Cancer this year in the US alone.  About every 32 minutes a man, woman, or child dies from brain cancer.  Hopefully, an impact can be made and these numbers can be reduced.  I have included some important links for Brain Cancer awareness and information for those who are interested.

http://www.abta.org

http://braintumor.org/

https://virtualtrials.com/index.cfm

https://virtualtrials.com/musella.cfm

In November of this year, there is a walk for Brain Cancer in Los Angeles and Jen wants to organize a team this year to raise money.  I will post the details later on - I hope we can get a large number of people from LA together to support Jen.  The date is Saturday, November 4th, so save the date!

We have actually been up to a lot in the last 2 months.

In the beginning of March, we attended our third weekend long Brain Tumor Conference at UCLA.  As always, this was insightful and a great source of comradery.

We also managed to get in a 3 day vacation in mid March when we went to Anza Borrego where they were experiencing a super bloom of wildflowers due to all the recent rain in California.  It was perhaps the best display they have had in about 20 years and we were fortunate to be able to go see it at it's peak.  It was amazing and Jen even managed to do about a 2 mile hike in the desert heat over uneven ground.  About 2 weeks later we went to the California Poppy Reserve for their peak.  Jen loves the wildflowers, unfortunately her allergies do not.  She has had her worst allergy season in decades due to all the abundant blooming this year.  She has tried taking an antihistamine on several occasions, but we have noticed a possible correlation between her taking one and her seizures.  Although uncommon, some of the modern antihistamines can apparently lower the seizure threshold in some people.  It may just be coincidental, but just in case Jen has stopped taking anything other than eye drops.  We plan to discuss this when we finally get in to see the seizure specialist. 

We also managed to take in a few concerts.  As promised, here are some photos - there are a lot.

BRAIN TUMOR CONFERENCE

ANZA BORREGO

The fields of gold on Henderson Road

 

 

 

 

There was a local sculptor with installations all over the desert

 



 

 

Soaking in the Jacuzzi after a long hike

 

CALIFORNIA POPPY RESERVE

A FEW CONCERTS

Vickie teaching Jen a dance move at The Squirrel Nut Zippers show

Jen with Vickie and Rich

Procession through the audience



Radiohead at Santa Barbara Bowl

At the Flaming Lips show in LA

Jen posing with weird statue in the Lobby - note the headdress of fingers

Watching PJ Harvey at the Greek

Well, that's all for now.

Another welcome stable scan!!!

Jen's scan was stable!!  Thanks to everyone for all the well wishes.  We are both very relieved.

Awaiting Jen's next scan

Sorry I haven't posted in a little while.  We have actually been extremely busy lately and have also gotten up to some fun activities as well.  I will try and post some of the pictures here in the near future as soon as I get a chance.

But, more importantly Jen's next scan is tomorrow.  We are both having a case of scanxiety as we approach it and again welcome all the positive thoughts and prayers as we hope for positive results.  Jen has been fairly active, but does feel as if she is having a little more balance issues and an increase in zoning out at times.  She also had two seizures on Monday night and another one again yesterday.  The seizures were all mild, but as you can imagine this contributes to our concern.  We both keep trying not to read too much into a few events as we have had concerns in the past and had stable scans following, but it's hard to not have apprehension approaching a scan even without any troubling incidents.  It's an odd thing living scan to scan, hoping for another sigh of relief and a brief respite from the omnipresent fears that come from facing a terminal illness.  Jen and I are both acutely aware of the realities of her disease, but still we try and remain hopeful and full of resolve.  Please keep us in your thoughts for tomorrow - it means a lot to the both of us.

Another Stable Scan!!!

Jen's scan today was Stable!  This marks 2 1/2 years since diagnosis - quite an accomplishment for GBM.  Jen's attitude continues to remain amazing as she keeps up the fight.

A Quick Update as we approach Jen's next scan

It's been a quiet two months for us as we have both battled being sick twice and haven't been able to enjoy the outdoors much due to the seemingly constant but welcome rain.  Jen did manage to squeeze in a couple of gardening days though and we also were able to check out a couple of concerts.

Jen at the Troubadour for White Buffalo

Jen at the Echo for Slim Cessna's Auto Club

Jen has been doing well, although she did have a mild seizure about 2 weeks ago.  She also seems to be having more frequent headaches, but that could be related to all the weather we have been having and her sinuses.  Her next scan is this Thursday.  As always, we welcome any prayers and positive thoughts sent our way.  I will update you with the scan results when we get them.

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.