Sunday, June 22, 2014

What??? He's doing treatment now?!?

The answer to the title's question is, YES.

It's called Stereotactic Radiosurgery & you can look it up if you want to learn more about it.  

A little over a week ago Mark woke up and decided to go ahead with the offered targeted radiation therapy on the big tumor in his brain.  We were staring down the barrel of another month or two and it was quite obvious that Mark was slipping into increasing fatigue and lethargy.  He didn't feel like God was leading him, for certain, one way or another on the he just made the decision.  I'm glad he did.  Because barring divine intervention and miraculous healing, this cancer will take my husband...and I'd rather LATER than sooner, of course.  Any time this radiation can buy us is time we'll take!  We are hoping and praying that the 5 treatments will do their thing and slow or stop the growth...or kill the tumor entirely.  There is still the matter of the other 5 tumors in his body but the brain one is the one that will kill him quickly.  I'm glad he chose the treatment.  

As to the emotional side of this, for ME, it feels like we're in a holding pattern.  Just circling.  I need to try and live a little more normally but I don't know quite how to do that.  How much of this is coping, shutting down, protecting???  I don't know.  I do keep my journal and count my BLESSINGS in my journal of gratefulness.  I am keeping track of this journey.  I am treasuring the GOOD STUFF and trying to hold on to those things that bring hope and promise.  

I'll admit I've been a little, or a LOT, grumpy and irritable this past week.  This morning I think I got that straightened out with God.  I wasn't taking the proper time to be grateful and thankful.  I was focusing on the negative.  It's easy to do...that Negative wants to swallow you up whole and eat you alive.  It takes a concerted effort to find and hold on to JOY.  The joy is there...  the deeper the pain, the greater the joy.  I think that's true.  At lease I am going to explore that thought a little looking for the joy in each day.

One major blessing is that Mark is not in pain.  He is still taking steroids and other than the fatigue he is doing okay.  We still have not been approved for Mark's disability leave.  I have no idea why it's taking them so long. Seems a little ridiculous.  Or a LOT ridiculous, considering. 

Mark's Dad is here for 2 weeks, visiting from the Czech Republic, where he lives.  It's been nice to have more family in town!  My parents came this weekend and that was a joy!  My Dad (Ron) and my FIL put new siding on the front entry.  Talk about something that makes ME happy!!!  They did a wonderful job and now I need to paint it.  No more embarrassment when people come over.  There are so many little (or big) projects like this that Mark can no longer do.  He's doing well to make it upstairs and to sit out and watch the kids for a while.  

My honey is no longer capable of the "Honey DO" these days!  :-(   He's pretty much capable of doing anything which is one of the things I've always loved about him.  He's a brilliant fellow in so many regards.

I also want to thank all who have given to us.  From our friends and family we've had monetary donations, offers galore, cards, special gifts via mail, & more.  Our family has done SO MUCH for us!  We are HUMBLED and SO VERY THANKFUL for each and every person who is praying, giving, and LOVING us from near or far!  THANK YOU!! THANK YOU!! THANK YOU!!  

I am planning to get out actual thank you cards in the mail one of these days.  There is no way I can fully express the love we feel from all of you.  Bless each and every one!  

We've been trying to capture as much fun and family time as Mark's energy will allow!  
Rowing around at Two River's Park 
 Avi and Libby ready for the filming of their movie.  The kids have had to get really creative with all our home time and they have done a tremendous job of being adaptable and good natured!
 Esther had to go it alone.  Thankfully we had a lead line, just in case.
 How I spend my quiet mornings if I get up before anyone else.  I sit by the pond and journal and read.  It sure helps keep me focused on what's important and it's essential to keep me feeling at peace!
 Father and Son...My Two Favorite Guys!
Papa and Libby at the River
Papa and Libby ready for their date.
at Happy Tummy on the West Side.  It used to be one of Mark and my fave places when we lived in Mukilteo.  We did a lot of little side trips to reminisce and share our special places with the kids.  We went to the beach at Mukilteo then out to lunch.  It was a fun and memorable day for all!

Mark and Avigail on their special date.

Friday, June 6, 2014


I haven't written in here in some time but I have been regularly journaling in my private journal.  Some of this journey we've been on has felt too private to share but someday I hope to be able to share it all.

As anyone who has followed our family knows, last Fall Mark was diagnosed with Metastatic Ocular Melanoma.  It's stage 4 cancer.  With this type of melanoma there is no cure.  There were treatments offered but none that would cure it and the margin of possible life extension was slim, at best.

We chose to go the route of trusting God, seeking God, and living by faith throughout this.  He has been so gracious to us.  Mark has remained asymptomatic this whole time.  He remained faithful to his job and all his other commitments.  It wasn't until Easter weekend when we were visiting my family on the West side that he began to have severe headaches.  He saw a walk in clinic doctor in Edmonds who consulted with an opthamologist and an oncologist and decided to do nothing at the time, just advised Mark to take pain relievers like Tylenol and to go get an MRI when he got home.  Since it was time for his 3 month check up scans anyhow, he requested a brain scan, which hadn't been done to date.

When he went in to get that done the doctor called right away and said they found a mass in there.  Mark was at work at the time and couldn't really deal with that information.  The headaches increased so much he could not work within a couple days of that news.  He got a prescription from his oncologist for some steroids to reduce the brain swelling.  They have fortunately also reduced his headaches vastly!  We got in to see a radio oncologist right away, Dr. Cheo, a very nice fellow who told us that Mark probably only had 2 months to live with a tumor this size ( ball sized) and 3 months if he continued to take the steroids.  It was in the left side of his brain, centered in the part of his brain that controls his right side motor function.

The doctor did offer radiation therapy, which is gamma knife radio surgery...targeted gamma rays to the tumor only and not whole brain radiation.  It sounded somewhat promising until we heard the possible things that could go wrong and the fact that there is a 70% chance of new tumors forming after that one was possibly controlled, if they could get it controlled.  Ocular Melanoma is a form of cancer that is resistant to Chemo and Radiation so it is hard to control.  Ocular Melanomu, unlike the skin melanoma, metastisizes in the BLOOD STREAM, not in the lymph system, so it can take root anywhere at any time.

At the same time, we got the results of the latest CT scans.  He had 3 NEW tumors in his body.  A new one in his liver (that makes two in his liver now), one in his adrenal gland, one in his (I can't remember and will add later), and then the one in his lung.  The one in his lung is stable but the liver tumor has grown and then there are the three new ones.  NOT a good sign and they did say once it starts progressing like this it will go very quickly.

I cannot begin to tell you all how devestating this emotional it has been, the turmoil, tears, pain, worry, planning for our "future"...

THIS IS THE MOST DIFFICULT THING WE HAVE EVER FACED.  No one plans on this.  You cannot prepare for it.  It cannot even be comprehended.

We live each day...KNOWING, yes KNOWING, that it is a gift.  That, in and of it's self, is a GIFT.  Not many get to live with this perspective.  Everything is precious; every photo, every memory made, every moment.

I will write more later but I wanted to update my friends and family who read this blog and I want to have a record of this online.  I will add some of what's in my personal journal soon.  I so want to share all the good things that have come about because of this diagnosis/prognosis.  All is not terrible and lost but all is redeemed.  Things may not turn out the way we hope and pray...but we know we are in good hands when we put our anchor down into the love that Christ has for us.

Yes, we are feeling more love than ever before...from our God, from our family, and from our friends.  We are humbled and thankful.  Overwhelmed by the goodness of God and of people!!


On the left of this blog I have posted a link to a fundraising site that my sweet friends here made for our family.  Mark is no longer working and though we are not doing any extensive treatments we've already amassed extensive bills!  We are in the process of applying for short/long term disability but it is only a fraction of what our normal income was...especially with no on call pay or overtime.  So far we have been provided for abundantly.  If you feel led to give, we'd be truly blessed but mostly we value the prayers that you send up for healing and for our family.  I felt a bit weird posting this link to the blog but we do need some help and definitely we need more prayers!!!!