Tuesday, August 25, 2015

August 26 - Twelve months since diagnosis

     It has been a year since we received Jen's diagnosis of Glioblastoma Multiforme.  Prior to the craniotomy and biopsy that was performed on Jen a year ago, we were uncertain as to what was actually going on since Jen's first seizure a little over a month earlier.  As we approached the day of the surgery, although we were aware that cancer was a strong possibility, we were still told that there were many other possibilities ranging from an infection to MS.  It's pretty bad when MS is one of the better options you are facing.  When Jen was in recovery, and I received the news from the surgeon it hit me like a bolt of lightning.  I thought I was prepared for the diagnosis but, when given the news, I realize that I hadn't really fathomed that Jen would actually end up having brain cancer.  I had still been so hopeful that it would prove to be something easily treatable.  I remember my conversation with the surgeon after he confirmed it was cancer.  I said to him as more of a statement than a question, "So she will be able to have surgery and get it removed."  He told me it was inoperable and I said "So then, radiation and chemo?" He told me yes and then I naïvely said "And that will take care of it, right?"  His answer was simple "We haven't cured cancer."  I started to break and asked him about other possibilities and he repeated "We haven't cured cancer."  I asked him what was the point then of doing the chemo and radiation and his answer was again pointedly direct "Time.  You buy time."  I asked him how long and he replied "Maybe a year."
     Well, it has been a year and Jen is still doing well considering she has about 5 tumors in her head that refuse to go away.  She has been stable now since beginning radiation treatments about 11 months ago.  Glioblastoma is a horribly aggressive cancer and the median survival time is only 14 months.  That means that 50% of people diagnosed with it live only 14 months or less.  All survival times are based on the date of diagnosis.  Fortunately, at 12 months and still doing well, it looks as if Jen will be on the better side of this curve.  Her surgeon was right that this is about buying time.  We are looking to buy as much as possible and hoping that if we can go long enough than perhaps there will be new therapies to prolong her life and hopefully eventually a cure.  Jen is a fighter and she has been doing things that I know few people would be willing to do.  The sacrifices she has made, and the discipline she has are a testament to Jen's love of life.  If anyone can beat this thing it will be her.

Friday, August 14, 2015

Back to the Bowl, A Meteor Shower, & Chemo :(

This last Wednesday, Jen & I took in another concert at the Hollywood Bowl.  We saw the Wayne Shorter quartet followed by a tribute to legendary bassist Jaco Pastorius.  It was an eclectic group of musicians with Herbie Hancock, Wayne Shorter, Booker T. Jones, Sam Moore (from Sam & Dave), and even Robert Trujillo (from Metallica) all taking their turns on the stage.  It's amazing to see these musicians who have been around for a while (Wayne Shorter is 82, Sam Moore is 80, and Herbie Hancock is 75) still giving it their all and still passionate about the music.

When we got home, we put on some music and spent about an hour and a half in our backyard watching the peak of the Perseid Meteor Shower.  Jen and I have probably seen at least 30 meteor showers together over the years.  It is something that we have always both enjoyed.  We usually drive out to someplace remote to get away from the city lights and lay out some blankets, turn on some music and watch the celestial fireworks.  Fortunately our house is at the edge of the city and we get quite an amazing view of the stars from our backyard, especially when we are close to a new moon as we were the other night.  For those of you who have never seen a meteor shower, you owe it to yourself to do so.  Get away from the city and be amazed.  It doesn't take long, even in a city like LA you can get to a fairly dark sky within an hour's drive.  The Leonid Meteor shower is coming up on Nov 17. - Go if you can.  On a good night you can see over a hundred shooting stars.  Jen and I wished on every one we saw.  We didn't talk about what we wished for, but for both of us, I am sure it was the same wish every time.

As I write this, Jen is lying in bed feeling the effects of the chemo.  I'm not sure I have discussed her chemo before, so I thought I would share her experiences.  Like there are many types of cancer, there are also many types of chemo.  Jen's is fortunately, a pill that she can take at home (rather than an IV that she has to do in the oncology department).  She is on her 9th cycle, which means the 9th time taking the chemo following the initial 6 week course of radiation and chemo.  There are different views as to how many cycles one should take, but the general practice is currently to try and get through 12 cycles if there is no growth in the tumors.  People have taken more cycles, and as we approach Jen's 12th cycle this will be a conversation we will be having with her doctors.  Chemo is not something that can be continued indefinitely though, as the cumulative risk of side effects becomes too great.  Each of Jen's cycles is 5 days on and 23 days off.  Jen doesn't typically feel the effects of the chemo until after the 2nd day, which is why we were able to go to the Bowl on her first day following the start of the current cycle.  By the 2nd day she experiences nausea, extreme fatigue, headaches, stomach cramps, constipation, and eventually diarrhea.  These symptoms tend to worsen over the next several days and continue for about 2-3 days following the completion of the chemo.  These are general symptoms and some days are better and some worse.  We try not to plan any activity at all during these days.  Fortunately, the chemo that she is on is one of the better tolerated ones.  She doesn't spend her days vomiting as can occur with some chemo drugs.  It is such a strange thing to willingly take a drug that is essentially poisoning your body.  The hope is that it affects the cancer worse than the healthy cells.  In the meantime, I am looking forward to Jen feeling better in a few days.

Tuesday, August 11, 2015

A Stable Scan!!!

Jen's latest scan from today is again stable!!!  Her platelets are holding and she will begin her 9th cycle of chemo tonight.  Jen is staying strong and continues to do well.  Thank you for all the well wishes.

Monday, August 10, 2015

Jen visits Deutsch

Jen and I visited her old workplace this last week.  We had lunch with many of her coworkers and then Jen walked around and got a chance to see many more.  We were there for almost 3 hours as everywhere we went someone new would want to run up and hug her.  Jen even got the opportunity to personally thank the president of the company for all the support Deutsch has given.  It was great to see everyone and I know it meant a lot to Jen.  Thank you again to all of Jen's Deutsch family who have shown so much love and support throughout the past year.

Jen's next MRI is tomorrow, although because of scheduling we may not get the results until this Wednesday.  Please keep us in your thoughts and prayers.  I will post the results when we know.