"An Old Soul"

I tried something new with the girls this week: I enrolled them in Vacation Bible School at the local Baptist church.  I really have a problem with organized religion after my mother, but I know that the girls would benefit from some teaching in this area, and I figured that a week at what was basically "camp" wouldn't be too harmful.

The girls really loved the experience. I did my best to put on the happy face and listen to them recite the bible verses and rhetoric that they were taught this week, but it was a conversation with one of the volunteers today that set me back a little bit.


I was the first parent to pick up a 3rd grade child - Jordan.  When she learned who I was there to retrieve, she asked to speak with me a moment.  Of course, having had numerous conversations with the school staff, I was prepared to learn about whatever shenanigans Jordan got herself into this week.  Instead, I was shocked and speechless by the conversation.


The woman informed me that it was a "pleasure" to have Jordan with them all this week. She said she did not envy my job of raising her - she "is definitely high-spirited and opinionated." Then the woman asked me if my husband did, truly, have brain cancer.  I answered that he does, and asked why she was asking.  The woman replied,


     "Jordan told us all, matter-of-factly, that her daddy has brain cancer.  We adults expressed how sad this must be for her and your family, but Jordan is apparently a very old soul.  She just looked at us, shrugged her shoulders and said, 'When he dies, we will be sad, but we will be OK. We are better for having known him.'"


I stood there, in the middle of this church worship hall with children screaming and running around and parents trying to corral their children, and just stared at this woman. I couldn't process what I had been told.


 I have always known that Jordan had a way of looking at the world that is beyond her young years, and sometimes is scares the crap out of me. This woman took my hand, promised that she and her pastor and everyone else she was going to tell about this would keep our family in prayer for Ken so he can be around for a while, but she finished by saying that she is certain that she has never encountered a child as advanced as Jordan, and she wished me luck in raising a child who was that perceptive and logical.


After signing out Taylor & Mandy from the Middle School program, I got the girls home and they went back on their Summer Break Schedule.  Ken was busy down the hill after his VA appointment with Dr. Big Head, and he stopped to purchase a shotgun that he really wanted.  I shared the woman's conversation with him, and he was as stunned as I was.  


Jordan never really needed to talk about Ken's cancer.  She has always understood what "death" means and the finality of it to us left behind.  I tried to get her counseling after Ken's diagnosis and again after his treatment started, but I was told that she didn't really need it.  Much like how she dealt with the bullshit her biological father put her through when she was younger, she just somehow dealt with it all by herself, and compartmentalized everything to where she is functioning and healthy about it all.  Hearing from a total stranger how she speaks about things really put things into perspective for me.  I have always handled my grief by remembering that no matter how little time I have with Ken, we are all better people for having known him and having had him in our lives.  I never voiced that with Jordan because she was so young, but apparently, she came to the same conclusion all on her own.


The idea of going to church on Sundays with the girls makes me physically ill, but I know it will need to be something that is done for them.  There is a lot of teaching that they need and my jaded experiences is NOT something to share with them at this stage.  I have been given a LOT to think about from a simple conversation.


Leave it to Jordan.

Ken's Cancer.....Stable!

Saturday, Ken received his disc from the VA with his MRI scans and results. He called me over to his office where he showed me that the disc had arrived. We looked over the disc, and I cannot begin to explain my relief when I read that there has been no change in his brain tumor. Oh, holy mother of god!! The tumor is the same size: it hasn't grown, it isn't moving, it is stable and status quo!!!

He had the MRI on Wednesday, and I started to fall apart from the stress. The radiologist made a comment while Ken was in the machine after hearing his history, "and he's still alive?" I was not able to hang in there any further. I started welling up with tears, and started getting horribly mushy and stressed that I was going to lose Ken.

Every day, Ken and I go through our days as though nothing is wrong. We very rarely discuss his cancer or impending death. We make jokes about The List and make jokes about Ken's lack of memory, but that is about it. We make sure to love each other unconditionally, deal with our disagreements and arguments so we do not stay angry with each other, and we worked hard to raise the girls as best as possible - to instill responsibility, love of family, and love of life.

So, every year when Ken goes in for his MRI to check the tumor, I become a mess. Each passing year that I get to keep Ken is priceless to me. At the same time, we are getting another year away from Ken's treatment. The magic number for brain cancer is 10 years. We are now at 3 years. What are the chances that the cancer will start to grow again? What if it starts growing fast and we don't catch it fast enough?

So, Ken and I are sitting next to each other in his office and looking over the report and comparing it to previous reports. The tumor is the exact same size. It has a different coloring to it than 2009, but it appears that it is possibly because of the radiation. 

I read and re-read the reports, and then throw my arms around Ken and I held on tight! What a great blessing! I say it every year, but I get to keep him!!

And the verdict is.....

OK, Ken's annual appointment at UCLA had gotten moved back a little.  So, we headed down to Los Angeles yesterday amidst all of the traffic and madness of an afternoon appointment.  Ken has officially reached "LA Driver status" as he was pissed off while driving and traffic was moving at a snail's pace.  When we passed a truck that was simply stopped in the #3 lane, Ken started yelling about what a waste of time that was...why couldn't the driver move his vehicle out of the freeway?.....Ken even wanted to pull over, back up and "kick that guy's ass!"  Hahahaha!  He now firmly understands the LA Driving Mentality and I suddenly make more sense to him.  


We arrived in plenty of time, so we parked at UCLA Medical Center and then walked for some coffee.  Ken and I remarked that after two years since he went through daily radiation treatment, we were still able to navigate around the area like we were still there everyday.  For something that "only" took 7 weeks, it was amazing that the impact of those few weeks have such a lasting effect on us.  I know that my side of this was remembering that it was said that Ken would not live to see our first wedding anniversary.  While he has now seen 2 wedding anniversaries, I find that I am still nervous about meeting with his radiation oncologist.  We have seen the report, so we know that the tumor has not grown, but meeting with the doctor is a different feeling.


While we waited for the doctor, we saw the nurse, Alice, who was there everyday helping Ken and me to deal with what we were going through.  Alice said hello, commented on how great we both looked, asked about our kids, and gave us an update on her life.  Again, it was only 7 weeks of treatment (going 4 days a week, every week), but the effects are lasting a life time - and many are in a great way.  There is a lot of staff that changes at the hospital. We know it's a teaching facility, so the Residents are usually always different, but I was happy to a picture of Dr. Jeffry Wu in a magazine in the waiting room.  


Dr. Michael Selch is still amazing and wonderful. He loved how happy and healthy Ken looked.  He asked about the number transferring issue that Ken faced during treatment, and Dr. Selch was happy that it is going away.  He is still mystified about this problem as none of the doctors in this field had ever heard of this effect.  Dr. Selch did the neuro tests that are now second nature to Ken, and then he said that the treatment seems to have been effective.  He stated that he is pleased with the fact that there has been no growth at all in the last two years, so he told Ken to return in one year, and that an annual MRI should be enough now rather than every 6 months.


As soon as Dr. Selch said that, I wanted to jump up and down and hug everyone!  This is one year ahead of schedule - an annual MRI.  We have the "official" confirmation that Ken is doing well and the tumor has been stopped. Of course, we know that the tumor is always going to be there, and that it could start to grow again one day.  We know that Ken needs to keep his stress down, and we need to be sure that he is napping once per day.  He can't push himself or it could trigger growth.  


But, while we are firmly aware of what needs to be done to prolong Ken's life, we are so excited that there is going to be so much life to prolong!  


Driving home was a nightmare.  Trying to get east on the I-10 after 3 in the afternoon was impossible.  It took us an hour to get from UCLA to the Staples Center, and it did not get any better.  We stopped for supper at the Bass Pro in Rancho Cucamonga and then headed home.  Luckily, a friend of ours was able to pick the girls up from school and feed them. 


Now, to get on with living and enjoying our life!

Dad understands Kenny

One of the "benefits" of Dad's visit was that he and Ken got to spend actual time together.  Ken was totally worried that Dad would be bored on his trip here, but that was definitely not the case.  What was really enjoyable for me was watching the two of them get to know each other.


Now, I understand that there was some major trauma between them when Ken was younger hence why he lived with Uncle Jimmy during high school.  I am well aware that most of it was related to Ken's mother, and Ken's ex-wife was a major reason that none of his family would visit him out here in California.  


Because of this length of time, Ken was so happy to be able to show his dad his life and share things with him.  I really loved watching the two of them get to know each other again, but what was really amazing was that Dad went with Ken to the VA Loma Linda for the MRI appointment.  Of course, there was so much emotion riding on this MRI - was the cancer spreading or was there a different problem?


Dad could not believe the quality of care and the great level of service that Ken received at the VA.  Ken arrived late for his appointment and was still taken in right away.  Dad noticed that EVERYONE was polite and kind.  What was apparent, to me, was that Dad was aware of how serious this is, and how much Ken's cancer affects us and determines our life together.  I don't think that Dad underestimated it or downplayed it, but it is always another thing to see for yourself.  


While the men were gone, I was trying to work, and since I had "down time" I completely fell apart with stress and worry.  Add on top of everything and Ken's ex filed a new family lawsuit against him, so there was more fun to add to our pile of issues.  

Ken - two years and counting

I'm sure everyone knows at this point, but in February 2009, Ken started radiation treatment for his brain tumor.  At this stage, it's still being referred to as a "tumor" versus "cancer" solely because of the slow rate of growth.  Ken had brain cancer surgically removed in 1999, but it came back.  And this time, the "tumor" is inoperable due to its centralized location.  The doctors say it would cause Ken more damage to remove the cancer than it's worth.  So, after talking to numerous doctors, the only choice was the Novalis x-ray radiation treatment at UCLA.


Now, Ken had told me everything that he went through during and post-surgery, so I informed him that he did not need to go through any treatments because of me.  However, he chose to go through the treatment: every day, Monday through Thursday for 7 consecutive weeks.  We drove to and from the High Desert to UCLA with the help of friends who took turns driving him.  I went on Family Leave to take care of Ken during this time, and he wanted to do the driving rather than stay down there so he could be home every night for the children.  


Loma Linda VA is an amazing place as is UCLA.  Despite my still not liking Dr. Big Head at Loma Linda (I still understand that brain cancer is not his specialty and he is regarded for his abilities - I'm still pissed at his "finding" the tumor while we were sitting there), I cannot say ENOUGH about the care that Ken has received at the VA prior to, during and since his cancer care.  The doctors and staff at UCLA have been amazing as well, and I am still completely thankful to Dr. Michael Selch and his team for inventing this treatment and for taking care of my Ken.


It has now been 2 years since Ken went through treatment.  That 7 weeks was a living hell for us - always worried and yet trying to keep busy and not worry.  Ken had a list of things he wanted to do as a "bribe" for going through treatment, so I documented every stage of our "adventure" and put it into a book - yes, I know.  I put everything in a book, but everyone I spoke to couldn't believe that I was going to document THIS!  Really?  Cancer treatment - why would you put the pictures in there?  Well, someday, the children are going to need to remember what it is Ken went through, and I'm sure that they'll laugh that his treatment was so "old school" and possibly "barbaric" depending on what is available in medical technology of their time.  I also wanted to make sure to document how Ken and I both felt immediately after finding out the diagnosis and what we felt during his treatment.  

See the Cancer Book

Now, of the amazing things to come out of Ken's ordeal - our marriage is one. I really wasn't ever going to get married again, but his diagnosis made marriage more important than ever.  We were able to travel and see and do things we otherwise wouldn't have made time for.  The best thing to come out of "all this" was the reconnection with old friends, and the making of new friends.  Some of the people who were instrumental in our getting through this have faded away, but they are in our memory nonetheless.  Other people, friends from my childhood whom I hadn't spoken to in years, were suddenly there in our life as though they had always been there - and still are.

This is what Ken subjected himself to 4 days a week for 7 weeks

He had to be bolted to the table for his treatment everyday. 

Next week, Ken will have another 6-month MRI to follow the tumor, and in April, we will return to UCLA to meet again for the annual check-up with Dr. Selch to ensure that the tumor hasn't grown.  No matter what, I have had Ken longer than we were originally told I would, and I am grateful every day for him.  My girls are much better having had Ken as their "best daddy ever" and I continue to hope and pray that this treatment holds forever, but at least long enough for a new and better treatment option for Ken's unique type and location of brain cancer can be found.


Again, it's been two years since his treatment began, and counting.............

Brain Tumor Walk

Last year was the first year that we attended the Southern California Brain Tumor Walk.  I found the Foundation while researching treatments when we learned that Ken's cancer had returned.  After attending the Walk in '09 and talking to others, I felt that I had to get involved.


So, I took on the volunteer status and became the Inland Empire Coordinator.  Sadly, my eldest son, Sean, got more a response through his Fraternity than I could muster in our local area.  One of the main problems I faced was that the Walk is held in Orange County, but through friends and family, we were able to raise a few hundred dollars and Eric Fonoimoana donated autographed volleyball and jersey for the raffle - the money raised on his items was $200 each!  Thank you Eric!


After all of the preparation, we arrived in Huntington Beach super early and helped get everything started.  Ken and I were thrilled to have the Committee Shirts and badges - especially since it gave us the opportunity to meet so many people.  

Ken and I chose to be in charge of the Kid's table so the girls could help.  

I was thrilled to see Marshall Varon and meet his wife, Karen.  I had not seen Marshall in years and he donated a beautiful pearl necklace for the silent auction.  (Marshall is the owner of Morgan's Jewelers in Rancho Palos Verdes.)  I hate that I did not think to take pictures with them, but I was engaged in talking to them and catching up.  Marshall could NOT believe how much Taylor and Jordan look like me and he made sure to tell them both to which they both got huge smiles.


This was the most successful Walk in its 9 year history.  Over $240,000 was raised and we had well over 1000 people show up to walk.  Ken and I are incredibly blessed that the Veteran's Administration takes care of him so well since his cancer is Service related, and in turn, we love that we were able to help so many others with our work this last year.  

More and more "blue shirts" for the increase in survivors each year!!

The girls were completely tired and were out before we left the parking lot!

Now, on to planning for 2011!

Ken's UCLA Appointment

Ken and I went back to UCLA on Thursday for his follow-up appointment.  It was this time last year that he had finished the Novalis treatment - 7 weeks of our lives that we will never forget.  Dr. Michael Selch, who was on the team of doctors that invented all of this technology, is Ken's treating radiation oncologist.  The initial plan was to have an MRI every six months and meet to check on the tumor to see if the Novalis actually "killed" the tumor or not.  We had planned on having to do this every 6 months for the next 2 - 3 years before a determination of "success" could be made.


At this visit, everyone agreed that there has been no growth whatsoever!   I had seen the Radiologist's report, so I read that the tumor had not grown, but to hear it from Dr. Selch was a great relief.  What was amazing was when Dr. Selch said that he did not need to see Ken for another year.  I asked him to explain why so long since it's only been one year, and Dr. Selch said that since there's been no growth or change AT ALL, then it's safe to say that it isn't going to continue to grow right now.  


To say that I was relieved would be an understatement.  Of course, Ken and I know that it's bittersweet because of my current testing, but at least we can say for certainty that Ken is going to be around for a while.  I was crying by the time we got back to the car from happiness and relief.  


While I'm not sure if I can pull it off, I have talked to the current So Cal President of the National Brain Tumor Society, and I have volunteered to help out with this October's walk.  Ken, the girls and I participated last year in this event, but our ability to get donations was seriously lacking.  So, I will work to help organize the Walk and to get more awareness for this disease.  


While the American Cancer Society is amazing, there is very little of their money that helps those with Brian Tumors.  Ken and I loved the support that we got from people who were going through what we were.  


I'm confident that Ken will be with me for many more years, and we will continue to take each day as we get it.  


So, here's the link to the site.  It  hasn't been updated yet (something I just talked to Vickie about), and I'll let everyone know when the link is ready for donations.