How it Began: December 2, 2015

Journal entry by Felicia Friesema

Friends and Family and everyone in between,

We are so sorry that this information is being relayed this way.  We are so blessed with so many of you, and there are only two of us.  So we hope you’ll forgive the impersonal nature of a blog post.

On the the day before Thanksgiving, Steve and I were informed that he had a large mass on the left side of his thalamus.  We have since worked feverishly to determine if we could get it out of him safely and what his treatment options were. We have here in LA some of the most skilled surgeons in the country and tried to find the best path, hopeful for something we could call good news.

Doctors are not gods.  And it was revealed to us that removal is not the best course to preserve his quality of life.

The plan is to do a biopsy on Dec. 10th.  While we have the best doctors and the best team, it is still a risky procedure due to the location of the tumor.  We need to find out what kind of tumor we are confronting.  The pathology will tell us how to best treat it.

Treatment will stall the growth for a time.

Steve is ok. His spirits are good and he’s surrounded by more love than he ever knew existed.  But his short term memory is failing and he loses words every day.  He tires very easily and my focus right now is to honor his wishes while protecting his health and well being.

Please do not email or call at this time.  There are so, so many of you, and again only two of us.  Please leave us messages here so that they are all in one place and we don’t have to shuffle between too many different places to respond.  The amount of communication and work we have ahead of us is daunting, and in between we need rest, recovery, and private moments of love and devotion.

On a personal note, I am ok in moments, but I am a shattered human being.  More than anything I hope that medical science is as miraculous as it says it is and that he will be without pain and experience no immediate dramatic changes.  I also know that this is treacherous ground we walk on and that time is of the essence.  We wake up to the juxtaposition of joy in another day together and terror at what may come.

There is no detailed prognosis yet. But we do know that there is no outcome we like.  And I have never been so scared.  But I have also never been so completely full of love for him.  He is so strong.  He is so good.  He is my hero.

And now for the part where I answer the question, “what can I do for Steve?”

We are lucky.  We have so much love.  And not insignificantly, friends to help us with errands and grocery runs.  We also have good medical insurance.  But even with this in place, our out-of-pocket medical expenses will be very high and our income will be significantly reduced.

Your help gives us the room to breathe a little easier and worry a little less.  At a time when we are surrounded by fear, having some peace of mind can be an incredible gift.  Thank you for your love and support.  Click here to contribute.

And now a word from Steve:

Felicia and I are trying to tie up some loose ends before my biopsy next Thursday.  But I want to take a moment to talk about this.

I forget things.  Alot of things, from moment to moment or from day to day.  It’s frustrating because I know that everything is important right now.  But Felicia or Larry are usually there to help me piece it together.

How do I feel?  I have this presence in my head.  It’s an odd feeling.  There’s no pain, really, but I am definitely aware that something is going on. As I speak, something whisks the words away as I’m talking and I struggle to recapture them.  It’s like they took a detour in my brain and got stuck on the 405.

My short-term memory is crappy.  The moments I have with people are left alone, singular and soon forgotten. But, so far, when Felicia asks me about an event from a few years ago, it’s there. I hope that when treatment begins, that progression will stop.

I miss being at work and in the studio.  I miss being with all the people I love at KPCC.  I’m still good at traffic.  We chose UCLA for the surgery and treatment and navigating to the westside can be tricky. The tumor can take away what I had for dinner, but not my memory of the traffic jams I’ve sat in.

I am sad. I feel the unfairness of all of this.  But I also feel the love for my wife, which grows every day as she balances the technical work of our affairs with the emotional work of our daily life. Like making sure I eat three solid meals. And I mean really solid.  Four,sometimes.  She tells I’m loved about a hundred times a day — I remember a few of them.  Larry, my brother in all but blood, is a rock for both of us and has been by our side from diagnosis until now.

More to come. Thank you for being my friend.

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