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.