Friday, October 28, 2016

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.