Monday, December 29, 2014

Jen gets wired

Yesterday a representative from NovoTTF came to our house and trained us for about 2 hours on the operation of the equipment that Jen will be using.  Today we met with the representative again at UCLA in conjunction with our oncologist where the unit was actually applied to Jen and the doctor activated the device.  This is actually a complicated piece of machinery that Jen will be connected to indefinitely if we decide to continue using it.  We will have to see how this impacts Jen's quality of life going forward.  She will almost constantly have to be tethered to either an electrical outlet or a portable battery pack.  Switching power supplies involves several steps - turn off the TTF field, then power down the unit, then switch out a battery or change from electrical to battery, then power the unit back up, then reactivate the TTF field and hope no alarms sound.  You can imagine how annoying this will be if Jen wakes up in the middle of the night half asleep and needs to use the bathroom.  The pack weighs about 8 pounds and the batteries last about 2.5 hours.  They are big lithium ion batteries each about 9 inches square and 2 inches thick.  The portable unit and battery are housed in a backpack.  The Novo team seems to be very supportive as far as trying to accommodate any special needs we may have and they are available 24/7 for tech support if needed - which is a good thing because we are on our first day of use and the unit's alarms seem to be going off frequently.  So far we have been able to troubleshoot them all, but the unit does seem awfully testy.  The treatment does show some promise, but we will have to see how it goes in the next several weeks of using it.  And now for some pictures.

Prepping Jen's dome. 

Make it so.

As Jen's sister is fond of saying "It's a Look."

Welcome to Google Head-ware.

Jen's latest chemo

Jen has just finished with her 2nd cycle of Chemo.  She definitely was very weak and nauseous during the last few days of it.  We will know in about 2 weeks whether or not it has affected her platelets and white blood counts.  Will keep you posted.

Jen's second opinion

Sorry for the delay in posting, it has been a busy week.  Last Tuesday, we went to Cedars Sinai for a follow up visit.  As mentioned earlier, we have been going there periodically for a second opinion.  The doctor at Cedars, pretty much agreed with our doctor at UCLA.  There is nothing further to do at the moment.  He is also not sure about the increase in size on the non contrast portion of the MRI.  He indicated that since he didn't see pressure being exerted against the non affected areas of the brain there is a good chance that it is not swelling.  He concurred that this could be lingering effects of the radiation.  There is no way to be sure and this radiation effect can last for up to 6 months following radiation.  We completed radiation 2 months ago.  I have also included pictures of 2 slices of Jen's latest MRI.  These are taken from the scan with contrast.

Monday, December 22, 2014

Jen's latest MRI

So Jen had her latest MRI today.  It seems as if it is a mixed bag.  The contrast areas, which are used to assess the cancer for determination of clinical trials, progress, etc. seem to be unchanged.  The MRI without contrast however, reveals a substantial increase in edema.  The fact that Jen has not had a pronounced change in physical or cognitive function since the last MRI is a good sign though.  This could resolve itself or it could not.  It is also possible that this latest scan reveals pseudo progression, which is almost like a false positive due to the lingering effects of the radiation.

Apparently, an MRI is not always an exact picture of what is going on in the brain.  We are to stay the course and Jen will have her next MRI in 4 weeks.  Meanwhile, we are seeing the head of neuro oncology at Cedars Sinai tomorrow for a follow up with them as well.  Although UCLA is Jen's primary treatment center, we have been following up with Cedars at various points as well for their insight and possible different treatment approaches.  So far, they have been in agreement with everything that UCLA is doing.

Jen is set to resume chemotherapy as well on Christmas eve.  For those of you who are unaware, Jen had a really rough go with her initial dosing of chemo.  Her blood levels tanked and she had to stop 5 weeks into a 6 week regimen.  She required 2 platelet transfusions and 1 hemoglobin transfusion.  It took an additional 5 weeks for for her to completely recover to the point where she could resume chemo.  Apparently this can happen sometimes and is more common with small framed women.  Anyway, her last round of chemo was started the day before Thanksgiving and only lasted 5 days.  She did well with this round, although it was at a lower dose than would normally be prescribed due to the way she responded with the initial round.  This next course beginning Wednesday will be at a higher dose and if she handles this one she will titrate up to an even higher dose for the following round.  Her schedule for the foreseeable future will be 5 days on, followed by 23 days off as long as she can continue to tolerate the chemo.

Saturday, December 20, 2014

Jen drops by Deutsch

Yesterday, Jen & I visited with her work colleagues as they were having their Christmas party at the office.  It was a very emotional experience for Jen to see all of her work colleagues, many for the first time in almost 5 months.  Jen says she felt energized by the visit.  Thank you to all of Jen's fellow Deutschers for making the visit joyous and memorable.  Deutsch as a company and as a group of individuals have been amazing through this difficult time.  Their generosity and support has been overwhelming.

Friday, December 19, 2014

My thoughts and feelings.

It’s kinda hard to say this myself. Some of you know, some of you don’t, that I’ve been struggling with brain cancer for the past five months. Many of you have wanted to know how things are going, but haven't wanted to bombard us with calls or texts, worried that you may be a bother. For that we have set up this website where we’ll post periodic updates on how I’m doing and the treatment options we are exploring. And by the way, I enjoy hearing from each and every one of you - it is never a bother. Please keep the calls coming as well.

Additionally, my very good friend Mary Moeller has also set up a YouCaring Site to help raise funds since our medical expenses keep rising as our income is dwindling. If you want to donate directly please use the link on this website.

At 45 years of age, healthy all of my life, my college sweetheart for my husband, and a wonderful life so far - who would have thought I would have ended up with inoperable Glioblastoma. I’m going to keep fighting the fight, and there is a lot to it believe me! So I wouldn’t exactly consider this a blog, but do check in for periodic updates.

Jen's Progress So Far

As many of you know, the last 5 months have been extremely difficult for us.  After an initial grand mal seizure back in July, we first were on a process of discovery which led up to Jen's brain surgery in order to biopsy 1 of several masses in Jen's brain.  Unfortunately the tumors are inoperable due to their size and proximity to too many eloquent areas of the brain.  Jen was diagnosed with Glioblastoma Multiforme - a particularly aggressive form of brain cancer.  After the surgery Jen had a few complications and has been in physical therapy and speech therapy ever since.  Jen had continued to have seizures (petite mal) several times a day until the last 6 weeks when we have finally gotten them under control.  She has had only 1 seizure in the last 6 weeks.  Jen has already completed a full course of radiation on her tumors.  We are proceeding with Chemotherapy as well, which Jen will be continuing to undertake for the foreseeable future.  Jen has also been doing a Ketogenic diet.  This is a very difficult diet to follow, but there is some evidence that it may be of help in fighting cancer.  We are also looking to begin Novocure TTF which uses an electric field to disrupt cancer.  This has shown some promising early results.  For those interested in learning more about the treatment options we are exploring I have included the following links:

I would personally like to thank everyone who has been there for us and shown us support.  We both appreciate it more than we can say.

On Monday, Dec 22, Jen will have her next MRI.  The best Christmas gift I could wish for would be for there to be some shrinkage in the tumors.  The very least we would hope for is for there to be no change.

Please keep us in your thoughts and prayers during this holiday season.  Be with those you care about and let them know how much they mean to you.  Life is precious and none of us know how much time we have.  As for Jen and I, we plan on fighting and doing everything we can.  We plan to cherish each and every moment we have to spend together.  Thank you, and God bless.