Today is Jen's birthday! Tomorrow Jen has her next scan. I will keep you posted.
Wednesday, August 31, 2016
Friday, August 26, 2016
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! |
Friday, August 12, 2016
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.
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.
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.
Monday, August 1, 2016
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.
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.
Subscribe to:
Posts (Atom)