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.
Thursday, December 22, 2016
Saturday, December 17, 2016
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.
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.
Here are Jen's music picks for 2016.
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.
- Fear - Beef Bologna: https://www.youtube.com/watch?v=dO5KoBHto80
- Dead Kennedys - California Uber Alles: https://www.youtube.com/watch?v=GoA_zY6tqQw
- Black Flag - TV Party: https://www.youtube.com/watch?v=B3yUQFluNq0
- Suicidal Tendencies - Institutionalized: https://www.youtube.com/watch?v=Hof4EESpe_k
- The Clash - Know Your Rights: https://www.youtube.com/watch?v=5lfInFVPkQs
- Bad Brains - Sacred Love: https://www.youtube.com/watch?v=DnswpHvAqLc
- Sex Pistols - Anarchy in The U.K.: https://www.youtube.com/watch?v=qbmWs6Jf5dc
- Suzanne Vega - Small Blue Thing: https://www.youtube.com/watch?v=tPkhoZzsono
- The Smiths - How Soon Is Now?: https://www.youtube.com/watch?v=hnpILIIo9ek
- Echo & The Bunnymen - The Killing Moon: https://www.youtube.com/watch?v=LWz0JC7afNQ
- The Stooges - I Wanna Be Your Dog: https://www.youtube.com/watch?v=BJIqnXTqg8I
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