Churchy-ness

Church is such an interesting experiment for me. I have enjoyed it more than I thought I would these past two weeks.  Driving home today Brian asked me if I would stop going as soon as he decided what congregation he liked best.  I really didn’t know the answer.  I like that it’s something we do together, I like that it’s my choice to go, I like the sense of community.  But is it for me long-term?

While I am not a Christian, when it comes to church, I’m wondering if that isn’t a misleading statement.  The one sticking point for me, if you will, is that Jesus died on the cross to save us.  I don’t agree.  I think Jesus was a pretty cool dude, an excellent teacher, amazing and in touch with the divine.  I think he chose to come here to show us what we are capable of.  To show us what’s possible if we allow it and if our intentions are clear enough.  I disagree that God required any sacrifice in order to welcome the rest of us home.

But I was raised in America (West by God Virginia no less), and I was raised by an ex-Catholic.  I went to public school, I went to church, and I watched TV.  Which to say that even though I’m not a Christian, I subscribe to  fundamental  Judeo-Christian ethics.  The ten commandments make basic sense to me, as does the golden rule.  Personal responsibility, family, marriage, compassion, social justice – all things I can and do get down with.

Which is why church is such an interesting experiment.  There are many messages there for me to be reminded of, to reflect on.  And I like that. It’s also a bit of a game to take references to Christ as Savior and make them applicable to me.  Sometimes is possible to just substitute Universe for Jesus.  When it’s not, the easiest way is to focus on love and compassion in the prayers and passages. I like the act of spending a dedicated hour each week to reflect on the universe and how it affects me and I affect it (not that this is the only time, but it is the dedicated time).

Phil’s sermon was pretty rockin’ today.  Brian and I spent a lot of time talking about it.  First of all, Phil was hilarious.  I don’t know if that’s the kind of thing preachers like to have said about them, but it’s true.  Also, the sermon was very conversational and very educational.  The Gospel reading was Matthew 23 (I saved the bulletin this week).  The gist of this passage is to warn us again hypocrisy in our church leaders.  Phil’s sermon also added in the hypocrisy of other leaders, and in ourselves.

In the middle of the sermon we got a history lesson about the four political parties of the day – the Essenes, the Sadducees, the Pharisees, and somebody else.  Sorry. I can’t absorb EVERYTHING.  It was cool to learn about – who they were, what they represented, how they shaped the cultural landscape of the time.  As a history major I deeply appreciated the context.  As well as the mental image of Jews wearing huge boxes on their heads with copies of the religious laws in them.  Why is that the preferred method for carrying things around?  A box on the head.  Really?

He was able to make references to current events as well as remind us that it isn’t just elders and church leaders who can be hypocritical.  We can be.  And often are.  We get caught up in wanting to be recognized, in needing to feel important, in being known for being good, respectable, fill in the blank.  But Jesus’ take come message was be humble and serve others.

After we got home we took a walk because it was such a nice day (I want to take advantage of nice weather as often as we can because soon we’ll be in perma-darkness and freezing temperatures).  We talked a lot about the service, the components we liked best, the similarities and differences between church services we went to growing up,  and what we thought we’d find at the other two congregations.  Though I’m realizing now that the one thing we didn’t talk about what how we are hypocritical and how we can serve.  LOL.  But it was good that church sparked so much conversation.

Will I keep going after Brian has chosen a church and gotten in to the habit of it?  I don’t know.  I’m glad that I’m getting so much out of it for myself and not just sitting there passing the time.  If I can get Phil throw in some Thoreau or Furness or Dickinson or Emerson every now and then I’d be pretty content.

Post-it

Our house is filled with post-its.  It’s one of my favorite things about our house.  On one of their first visits with us, Kay secretly went through the house before they left and hid post-its everywhere that said “love you mom and dad.”  It was fun to find them over the following weeks.  It was special and Brian especially loved it.

Inside the lamp shade

Most of them we left up where we found them. As reminders of Danny and Kay and that we were loved.  Some of them were not practical to keep where we found them.  Kay put one on Brian’s peanut butter jar and one on the back of a Kleenex box.  When the peanut butter was eaten, Brian wanted to keep the empty bottle forever.  I thought, “this is not good.”  So we compromised, and, when necessary, started moving some to the inside door of our laundry room cupboard.

Cupboard Door

On subsequent visits Kay continued to leave us post-it’s, with new and different messages. Though I must say that we aren’t making it easy on her because we don’t take down the old ones!   She’s had to get more and more creative.  What’s fun is knowing that we haven’t found them all and also the fact that we sometimes forget that we found them so we are constantly discovering them.

Under the key dish

A while later Brian and I started to leave each other notes of encouragement and love.  Notes we could see on our way to work or first thing in the morning when we woke up.  We keep them up, though it’s nothing we’ve ever talked about.  Now our house is covered in post-its.  I hope we’ll keep adding to them.

By the door

A bit of churchy-ness will come later.  I’ll post in the morning.  It’s been a good week for reflecting for me.  I had great conversations with Niki, Allen, and Phil, and Brian and I had some great post-church conversations today.  For now, here are some of our post-its.  They remind me of being loved and cared about.  They are part of what makes our house warm and happy.

Cookbook

I'm sorry post it

Guess who was here

Recipe

Love mom and dad

BathroomThe door

The door again

The laundry room

The laundry room again

Updates?

We’re not doing so hot this week.  I haven’t wanted to post anything for this reason.  I feel down, Brian feels down, we’re struggling, how many posts can you, the reader, tolerate like that?  I’m not trying to depress all of you too!  And we’re probably struggling because we’re choosing denial for the time being.  And while this is ok for the short-term, denial has lots of cracks in it that are seeping through.

A few updates that I can think of:

• Brian met with the psychiatrist yesterday.  He said he enjoyed the appointment and liked her very much.  They are upping the Paxil dose and she recommended he take an additional Ativan at night for sleeping.  She said she didn’t really care for Paxil all that much, but that coming off of it was difficult and that wasn’t something he needed right now.  She also didn’t believe that the excessive fatigue could be entirely attributed to the Ativan.  She was of the opinion that having cancer in general and just being straight up depressed were bigger contributors.
• On Tuesday, 11/1, Brian has two appointments.  2p with Dr. Y (psychologist), 3p lab work, and 4p with Dr. C.
• The next brain MRI has been scheduled for Dec 5, and we meet with Dr. M and R right after that.  I might have said this already.  Can’t remember.
• Brian has been easing in to volunteering at the service learning office and is enjoying it over there.  He went in for a couple of hours yesterday and had so many visitors that he didn’t complete the task he went in to do.  Which is an excellent problem to have.  Lot’s of people heard he was there and wanted to come in and see him.
• Brian’s termination date has not been officially set, but they are going to wait about 30 days.  This has something to do with the life insurance.  Brian would have to pay a large fee or premium to keep his life insurance policy active if he were terminated before 30 days.  After 30 days, no fee.  And since life insurance is vital to us right now and there is no way he could get a new policy, Elon is once again helping us out.  They aren’t paying him anymore because he’s already been approved for disability, but they are not finalizing the terminate until later.
• Danny and Kay are coming down in a couple of weeks.  Veteran’s day weekend.  I’m really glad that they are able to come down each month, it’s good to have them around and I’m glad that they can spend time with us, especially Brian.  We got tickets to see the Air Force Concert Band that Saturday.  I thought that is something they would enjoy so Brian went and got us four tickets.  Apparently they are a very famous band so I hope they are also a very entertaining band!
• Brian has been on his increased BRAF dose for about a week and so far he seems to be controlling any negative side effects.
• On Wednesday I left early from work and Brian came and picked me up.  It was such a nice day.  We went to Carrboro to get coffee at a place that I’ve heard has excellent coffee, then we drove to the NC Botanical Gardens and walked around and took a short trail through the woods.  I was worried about Brian over extending himself and ending up with a lot of joint inflammation the next day, so we didn’t push it.  But it was beautiful outside and nice to be taking a hike together.  I’m glad we had the chance to do that before the weather turns permanently cold for the winter.

I think that’s about all.  At least, all I’m going to mention.  Weekend plans are standard:  groceries, laundry, now church.  I’m going to try to have coffee with a friend on Saturday, lots of movies are in store for us (although Brian thinks we got “weird movies” from Blockbuster this week).  I imagine at some point I’m going to have to rake leaves.  Or find a young neighbor boy to under pay!

Take care everyone!

Oh, hey, I’m about 15 comments away from my goal of 100 comments by Halloween.  Feel free to comment – what are all of you doing this Halloween weekend?

One Week Later

I’ve been thinking about this past week and how it’s gone for us and how I feel.  I’ve also been thinking about what I might write about all of that.  I keep coming up with nothing.

Nothing.  No feelings about it one way or the other.  And I feel like the people in our lives feel that way too.  There has been very little feedback that’s made it’s way to us.  I don’t know if that’s because  people don’t know what to say, because people can only respond to so much bad news before it gets tedious, or because it didn’t really sink in with anyone.

Brian has cancer in his brain.  His brain, his bones, his liver, his lungs, his lymph system.  And I feel… absent.  He and I haven’t talked about it much.  We parsed through the doctors prognosis last week and decided that nothing much had changed and that this was a good thing, but that’s really about it.  And internally, I haven’t really thought much about it either.  I’m working a lot of denial right now.  For the past 10 months we’ve been holding out this hope, “at least it’s not in his brain.”  And now that it is, I’ve conveniently forgotten that its NOT being there was ever important.

Cancer seems to be winning in a very subtle way.  Like, it’s not totally kicking our ass to the point that we give up and call mercy rule.  But it’s winning just enough so that we keep our hope alive and can pretend that maybe we’re ahead sometimes or that we’ve got a chance at a comeback before the buzzer sounds.  When I think about that, I get really really scared.  Sometimes I think that I’ll look back at this year and think, “I just watched it happen.”  I couldn’t do anything else and I didn’t quiet know it at the time, but I just watched it happen.

When my mom had a series of strokes in 2006 and almost died, I was overwhelmed.  I was overwhelmed to the point that I no longer use that word to describe my feelings or circumstances.  Because I know what it truly means to be overwhelmed.  It means waking up to go to work, walking out to the living room, sitting down on the couch, and “coming to” three hours later.  Having missed work, having not moved, have been some place else – because I couldn’t cope with the thought of her dying, of all the tasks I needed to complete, of all that was sitting on my shoulders, of how alone and isolated I felt.  So I don’t say that I’m overwhelmed anymore because nothing comes close to that experience.

Sometimes I feel like I may be eliminating “scared” from my vocabulary for the same reasons.

Care Team

How many doctors does it take?

Brian’s main doctor is Dr. C.  She is a medical oncologist.  We like her a lot and she has been very caring.  She’s responsive, if sometimes too vague, but a good doctor.  Her one flaw is that she is not good at delivering bad news sometimes.  The first time we met with her she laid it on so thick that we thought Brian was going to kick the bucket so soon that opening Christmas presents might not be worth it!  Then,last week when she called to tell Brian about the brain tumor, she was basically like, “you have a brain tumor, enjoy your day!”

Dr. C has a little sub-team of people who help us.  Sandee, her admin assistant who does all the scheduling and shuffling of paperwork.  Virginia, her med student who shadows her and is getting trained up to be just like Dr. C.  There is Evelyn, who also does administrative stuff and Gayle who runs the Ippy program, which Brian was a part of from March through June 2011.

Now we’ve got Dr. R and Dr. M, who are radiation oncologists.  I think they are going to be with us for a while.  I feel like we keep dodging the radiation bullet, but I’m not sure how long we can keep that up.  Hopefully, this next MRI after thanksgiving will show no growth in the tumor and we’ll dodge radiation for a while longer.

Then there is Dr. Y, the psychologist.  Almost a whole post about him.  Scroll down.  He’s cool.

Previous team members:

Dr. Ollila – he is a surgical oncologist and is the first doctor we met with after the dermatologist first diagnosed Brian.  He did the first two surgeries in 2009 and we stayed with him and his assistant, Trish, until the summer of 2010 when the cancer spread to the lungs.

When it was time for lung surgery we got hooked up with Dr. H, a thoracic surgeon.  He did the third surgery and we stayed with him for about 4 months (August to December 2010), until the growth in the lungs was too much to make surgery a viable option.  He was the one who told us about Dr. C, though I think it was Ollila who made the referral).

In January and February we were BFF with Dr. A and his assistant Denise.  They run the IL2 program in Charlotte, one of a very few IL2 programs in the country.  IL2 is the only cure for melanoma that exists.  Unfortunately, less than 5% of people respond to it.  Brian was not one of them.

Andreas, at the EAP.  Brian and I are both fuzzy about how long Brian met with him.  But current think is about 6 months, from March-ish through August 2011.

Our out-of-state team members are Dr.K and Anna at SC Oncology Associates and Dr. Q, a dermatologist in Columbia that we went to get monthly exams while Brian was in the study.  Part of the study required regular skin exams, and it was easier to use Dr. Q and have the cost covered up front than to see our Burlington dermatologist, pay for it, then get reimbursed.  Dr. Q was fun.  As were Dr. K and Anna.

We’ve been lucky to have amazing people to help us the past two plus years.  Everyone  has been amazing and so helpful.  We’ve appreciated all of them and felt taken care of as well as well cared for.

A Churchy Sunday

I’d say we had one of the better weekends that we’ve had in a while.

I got home early on Friday and we went to Barnes & Noble to peruse the books.  I like to look at the cookbooks and I’m realizing that I have no idea what Brian does when we’re there.  LOL.  We each go our separate ways and then find each other again when we’ve had our fill.  Then we walked over to Red Bowl and had sushi and stir-fry.  I ended up with a sauce that had flour in it so I had some tummy trouble that evening, but it was good just the same.  After dinner we got dessert at the co-op (sugar-free has gone completely out the window) and came home and finished a movie.  Out of Africa I think…

Saturday started with Brian’s first ever pedicure, which HE LOVED.  I tried to tell him for years, but now he knows.  As we were leaving an Elon student was getting dropped off by her boyfriend and you could tell she was trying to get him to come in.  The staff person asked him if he wanted to join his girlfriend and he said, very clearly, no way.  Brian piped up and told him that it was his first time too and it was awesome.  As we were leaving the guy was starting a manicure.  I told Brian he should be proud – he just changed that guys life for the better.  Brian kept marveling how clean his feet felt all through our Panera lunch.  We also swung by Om Shanti, a yoga studio in the same shopping plaza.  We’ve both read a bit of research about the benefits of yoga for cancer patients.  If nothing else, it stimulates the lymph system, and since Brian has 37 less lymph nodes than the rest of us – it will help with his lymphodema.  Which, incidentally, hasn’t really been a problem since he lost weight.  That afternoon we did popcorn and a couple of movies.  The Social Network and Crazy Heart.  A good day, good quality time, good relaxing.

When the last movie was over we were just sitting in the living room, not talking and not moving on.  This is kind of our M.O. because we just don’t want to get up just yet.  I could tell that something was bothering Brian, he looked kind of sad.  I asked him a couple of times if he was ok and he finally told me that he had felt another tumor on his neck where before he’d only felt one.  In that moment I was overcome with fear.  Pardon my language, I really don’t mean to offend anyone, but this shit is growing.  It’s growing and growing despite our best efforts and we’re just watching movies through the end of Brian’s life.  I was so sad and had a good cry while Brian sat with me and repeated that it would be ok.

This morning I woke up, ran my 5k at Elon (39 minutes – SO VERRY VERRYY SLOOOW), then home for breakfast, collect Brian, and head to church.

Church was trippy.  In many ways, the UCC service was exactly like the Catholic services I grew up with (my mom and I were Episcopalian, which I call “Catholic Light”).  The flow of the service and the words and passages were exactly like a Catholic service.  Is everybody Catholic Light?  Of course, certain things were missing – no crucifix down front, no kneeling benches on the pews, and only one candle on the altar instead of 970.  But other than these things, I was repeating the words right along with Rev. Fuller without even reading the bulletin.  It was like I had been to church yesterday.

Rev. Fuller did a nice job.  She’s been at Elon about a month I guess.  Her homily was focused on the word “holy” – how we don’t often describe ourselves as holy and how it’s important that we take time to focus on that in our daily lives.  A striving to be more like Jesus, who IS someone we would describe as holy.  The readings were Leviticus and Mark maybe?  Leviticus definitely, but I can’t remember where the gospel reading came from.  It was the one where the lawyer asks Jesus was the greatest commandment is and Jesus says thou shall have no other god but me and the second is like unto it, love they neighbor as thyself.  I am, of course, paraphrasing Jesus.

Phil was there, as was Leo Lambert and his wife (the president of Elon).  They sat behind us and man, can Dr.  Lambert belt out those hymns!  I felt a little old-fashioned when we were doing the “peace’ part.  When we do “peace” we say “Peace be with you” and the response is “and also with you.”  But this morning everyone just said “peace be with you” and then the response was “peace be with you.”  They just repeated it.  But my brain was on autopilot, so I felt funny.  I didn’t do communion and I was really curious to see how they pulled off the drinking of the wine.  In this day and age of “use two pumps” at the hand sanitizer stations that you can find every 10 feet in public places, I thought, all these people are just going to drink after each other?  But no, they dipped their pita bread in the wine – a very common sense solution.  Brian said this is what they’ve been doing at his church in Wilmington for a while now.

The service also featured a silent prayer and reflection time, you could come up to the altar and light a little candle for someone or call out who you wanted the group to pray for.  It was nice, and I enjoyed praying for strangers – it was nice to feel I was helping someone.  All in all it was a nice service and a nice experience.  There were maybe 15 people there (which to me is something in its favor). And it was nice to attend a service in the same chapel we got married in.  But man, somebody has GOT to do something about those hymns.  Heaven has two syllables, not one.  Victory has three.  You should write the words and music to match each other.  Not just cram a nice prayer to some music and make it fit!  Some of those hymns are a little rough.

I guess I was wrong about the other denomination Phil was telling Brian about.  There is only the UCC that they discussed.  Phil was just telling Brian about the various UCC congregations in town.  So there is the one down the street from us, the one at Elon Chapel, and then the Elon Community Church.  All are UCC.  I guess we’ll take a little church tour and see which one we like.  Next week, we’ll go back to Elon Chapel and watch the amazing Phil in action.

After church we went over to Moseley Center and packed up Brian’s office.  It was bittersweet for him.  I’ll leave that for him to post about if he wants to.  He still doesn’t have a termination date, but we packed up all his things, and that was one of the last physical ties.  Then it was grocery shopping for the week.  Ran in to my good bud Ruthie at the co-op (hi Ruthie!) and then home for… you guessed it, movies!  We watched a movie called Adam, which was sweet, and right now Brian is watching Dinner for Schmucks.  I watched the first 30 minutes and had watched enough.

A busy week ahead.  I have to work Halloween (college kids and Halloween, geez) and there is paperwork loose ends that I’d love to be able to tie up this week. I didn’t see my mom this weekend, so I want to try to make it out there at some point.  Also on my list is to drive out to the park in Greensboro where my race is going to be.  I want to be sure how to get there and I want to run the loop just to check it out.  We are also working on our Thanksgiving menu – which will be tricky to pull off with the race, but at least we don’t have to worry about cooking the bird!

Take care everyone – I hope the long post was ok.

Dr. Y

After our meeting with Drs. R and M, we drove over to Farrington (off site annex of UNC Hospitals where Brian’s appointments some times are) to meet with Dr. Y.  He is a psychologist that Dr. C recommended a few weeks back when Brian was telling her about the excessive fatigue and depression.  We mis-heard her or made some wrong assumptions because we thought Dr. Y was going to be a psychiatrist.  Meaning, he can write prescriptions.  I mean, Brian did just ask Dr. C to change his Paxil dose or add on to it.  So, it made sense that she then referred us to someone who could do that better than she (being an oncologist, not a head shrink!).

But no.  Dr. Y is a very nice, pretty cool psychologist and Brian is going to start seeing him every couple of weeks.  I’m really glad about this because Brian hasn’t been seeing a counselor since August.  He was seeing a dude named Andreas for several months through Elon’s EAP.  When Brian was hospitalized in August for the spine crushing tumors thing, he fell out of contact.  Then Brian was planning for, and then being in, Ohio, so he didn’t see him through September. When he came back from Ohio and called to schedule again he found out that Andreas got a job in South Carolina and was gone.  Craziness. And a big bummer because Andreas was cool. Because Brian was soon to be switching health insurance carriers (due to long-term disability) he didn’t want to start seeing anyone new at the EAP, only to have to stop in a matter of weeks.  So no attending to mental health needs (during a high-need period) for several months.  Not good.

So it was luck that Dr Y ended up being a talkie doctor instead of a medicine doctor.  And, upon reflection, a nice gesture of Dr. C’s to refer us to a talkie doctor and not automatically to someone who’s just going to listen to symptoms and then write a script.

I came in to the session with Brian (because we thought we were going to be talking meds and symptoms and side effects and Brian wasn’t sure he could capture it all).  Brian talked about how he has struggled the past several months and how he wants to feel better generally and not let me down.  We both talked about mortality and prognosis and how we do and don’t cope with death and cancer and long-term treatment and relentless stress. You know me, it’s always good to process!

Dr. Y works out of the Cancer Support Center.  He’s going to hook Brian up with a psychiatrist for med management every 4-6 weeks.  So hopefully Brian can get off the Ativan (which is what I think is making him so tired) and either boost the Paxil with something else or try a new anti-depressant.  Dr. Y also filled us in on other services run by the Cancer Support Center.  They’ve got a peer program where Brian can get paired up with someone else who’s “been there.  Done that,”  which Brian was interested in.  And, the real bonus?  They do free massage’s  for patients AND CAREGIVERS.  I think two is the lifetime limit, but two free massage’s?  Hello.

As for my own mental health needs, I am on my third counselor.  The first two, every time I opened my mouth, just poured out sympathy and empathy for all that I am juggling.  I need to be challenged to think critically and pushed to reflect on things I don’t want to reflect on.  I don’t need sympathy from my therapist.  I need therapy.  Number three seems pretty amazing. I was telling her about my trouble with overeating and then telling her how people (including counselors 1 and 2) keep saying that my overeating is no big deal and is perfectly understandable given my circumstances.  Right away she said, “well, that isn’t helpful.”  Right away I said, “I love you.”

(I didn’t actually say that, but I sure as shootin’ thought it).

She also said right away that she wanted to work on stress reduction and finding other coping strategies besides eating.  We’re going to work on ways to sleep better and ways to process through tough moments.  We even talked briefly about how I can do these things and then teach them to Brian.  So I liked her very much.  I’ve only met with her once, but I felt a lot better right away. Third times a charm!

Thus ends the mental health update.  Lot’s of potentially positive things coming our way in the near future thanks to our care team.  And isn’t that a post of it’s own – listing all of Brian’s providers and what they do!

A Reading From Our Wedding

At our wedding we had each of our 10 guests stand up and read a poem or passage or quote.  Mad props to Niki, Jeff, and Adam – the only people who could have pulled off what we gave them to read.  And in a church no less!

We asked our friend Chrissi to read this passage by Emerson.  It has always been a favorite of mine.

A little consideration of what takes place around us every day would show us, that a higher law than that of our will regulates events; that our painful labors are unnecessary, and fruitless; that only in our easy, simple, spontaneous action are we strong, and by contenting ourselves with obedience we become divine.

Belief and love, — a believing love will relieve us of a vast load of care. O my brothers, God exists. There is a soul at the centre of nature, and over the will of every man, so that none of us can wrong the universe. It has so infused its strong enchantment into nature, that we prosper when we accept its advice, and when we struggle to wound its creatures, our hands are glued to our sides, or they beat our own breasts.

The whole course of things goes to teach us faith. We need only obey. There is guidance for each of us, and by lowly listening we shall hear the right word. Why need you choose so painfully your place, and occupation, and associates, and modes of action, and of entertainment? Certainly there is a possible right for you that precludes the need of balance and wilfull election.

For you there is a reality, a fit place and congenial duties. Place yourself in the middle of the stream of power and wisdom which animates all whom it floats, and you are without effort impelled to truth, to right, and a perfect contentment.

Ralph Waldo Emerson

Church

I don’t go to church.

In fact, I think in the last eight years I’ve graced the doors of a church four times (two weddings, one of which was mine, a funeral, and once when Grandma and Grandpa Hill had their wedding anniversary and we all had to go in to the sanctuary so they could have a big enough space to take pictures with all 4,284 members of the family).

The reasons why I don’t go to church are numerous.  My 8-year-old niece once asked me why I was the only person in her family that didn’t go to church.  How to answer that!?  She later asked me why I was the only person in her family that didn’t wear glasses.  So I think she was asking less about church and more trying to figure out why I’m so different!

For this post, I’ll stick with the main reason I don’t attend church which is that I am not a Christian.  I don’t feel it’s right for me to go to church when my beliefs differ.  Then I’m doing it for someone else, and that simply doesn’t feel good to me.

But I do have a belief and a faith in a Maker.

I believe we are all going back to the same place when we die, regardless of what we do or don’t do in this lifetime.  All of us. Even Hitler.  And the place we’re going back to is God.  We rejoin God, the Maker, the Place We Came From, The Process of Being.  We become what we were, which is God.

I prefer to call God the Universe because I think it better encompasses the fact that God is a process, not a being with a location or an agenda.

I believe we are all pieces of God that came here to have the experience of being human.  I believe that we can do all the things that God can do, we have just forgotten.  Our higher powers get blocked out by ego and negative thinking and general human-ness.

I believe that before we got here we picked out our experiences.  We made pacts with those souls that would be our parents, our siblings, our spouses, our most important friendships. Good and bad.  If you have horrible parents it’s because you and they agreed to the relationship and agreed to the experience of :being and having horrible parents.” No judgments.  Just experiences.  We picked all our positive experiences as well as our negative ones.  We didn’t necessarily come here to “overcome” or “triumph over adversity,” sometimes, we’re just here to experience it and see what happens.

I don’t believe that it’s all scripted out with no room for improvising.  But we can’t escape certain relationships and feelings.  If we end up bypassing it in one period of our lives, it will swing back around and get us in another.

I believe we can come back and do it again if we want, with a totally different set of experiences.  I believe that sometimes we come back with the same important souls because we like each other so much!

I like to get down with the Transcendentalists and look for divinity in nature.  I believe that your intuition, your gut, is the universe talking to you.  I think Ralph Waldo rocks.

I believe that thought creates reality, which is why I believe that prayer is so powerful.  I believe you can experience God any time you want if you put your intention out there and open yourself up.

All of this is to say that the past few weeks Brian has been talking about going to church.  Seems he and Phil S. had a nice convo a while back  and he suggested that Brian check out the Sunday service at the Elon Chapel, or the service at this other denomination down the street whose name I forget.  United Church of Christ? First Christian Church? First United Christian Church?  United First Christians?   Whatever they are calling themselves, and whatever Phil told Brian about them, Brian thought it sounded like a group of people who matched his values and his beliefs.

Because I think this is a good idea for Brian and because I am the activator in this relationship, I have decided to get him to church by going with him.  Now, I’m a Unitarian Universalist if I’m anything.  But since Bur-vegas doesn’t sport a UU denomination, we’re going to give these two a shot.

Service at Elon starts at 11a this Sunday.  Rev. Fuller (the new chaplain at Elon) is doing the service this week (she and Phil trade-off).  Coffee and donuts at 10:30am.  I’ve never found much for myself inside a church (not a lot of nature in there), but I’m willing to give it go for Brian and I think it will be good for us.

Cyber Knife

Let me go into update mode and fill you in on all that is happening:

• Brian has a small enhancing lesion in his right frontal lobe.  It is very small and though they cannot say with 100% certainty that it is cancer, it is.
• What we already knew was also confirmed.  If it’s there in one little spot, it’s there in a lot of other places too.  By the time cancer is big enough to see, there are millions and millions and millions of cells there.  It really is “in his brain.”
• He passed all his neurological exams with flying colors.  This becomes important later on when I get to prognosis.
• The standard method for removing brain lesions is through radiation.  If we were to do it, it would be a one day, outpatient event.  Well, it would actually be two days.  One day of prep and then the day of the actual radiation.
• They would use a machine called a Cyber Knife, which I think is an incredibly unfortunate name, but Brian and Dr. R thought it sounded kind of cool.  The Cyber Knife doesn’t actually cut him or come into any contact with him.  It just flashes beams of radiation at his brain from 100’s of different angles.
• Dr. R is a radiation oncologist.  He’s a resident, 8 months away from being an attending.  Right now, his attending is Dr. M.  We met with both of them yesterday.  They both performed neurological exams and they both were on the same page for most of our visit.
• They were inclined to recommend “wait and see” right now.  Which – that is truly a separate post.  How much of cancer treatment is waiting and seeing, and what that does to you mentally and physically and how no one talks about that as an acceptable form of treatment.  But anyway – they felt that right now, it’s so small that radiation might not be necessary.
• He described its current size as being half of the tip of your pinky.  He said,  usually they like to wait until it’s the full size of the tip of your pinky.  Also, if we wait, and it does grow, this is confirmation that it is cancer as opposed to some other random thing in his brain.
• Side effects of radiating the brain include swelling, headaches (guaranteed), bleeding, seizures, personality changes, memory loss, and necrosis of the brain (which is basically where the radiation kills pieces of the brain on accident, those pieces die, shrivel up, and decompose, and then they have to go in and cut out the necrosis).  We were told that, aside from the headaches, the other side effects were relatively uncommon.
• Dr. R and Dr. M told us that the tremors in Brian’s hands were a red herring for brain tumors and that we were lucky that Dr. C caught that and ordered the MRI.
• All our doctors, Dr. R, Dr. M, Dr. C, and this other dude, Dr. E, are going to consult about Brian on Friday morning to see if they all agree that waiting is the thing to do right now.
• The one issue that concerns us most about radiation is that Dr. M said that Brian would have to stop the BRAF two-weeks prior to radiation and 1-2 weeks after.  WE DO NOT WANT TO STOP THE BRAF.  This would be bad and Dr. C would agree with us.  She might even push to keep us on the BRAF while doing the radiation, but I don’t know if she could pull that off.  The reason you can’t do both is because no one has studied the effects of both and it could be bad to mix them.
• The question Dr. M said was most important to consider right now is:  where do we go from here?  Radiation is a relatively simple thing and basically safe.  However, radiation is most commonly used when there is only one site.  Brian has multiple sites, in multiple major organs:  lungs, liver, bone, spine, and now brain.  Some doctors would argue that when it’s that systemic, why bother with radiation.
• The problem with not doing radiation is that if/when the tumor gets bigger, it can really affect Brian and cause him significant problems.
• PROGNOSIS:  This is complicated and completely subjective.  Not necessarily from the doctors perspective, but in how our individual brains spin the information.  This is what I heard:

When cancer metastasizes in the brain, people are generally given 6 months to less than one year to live.  That’s the standard answer if you’re asking.  But you have to factor in all the specifics about Brian’s individual case.  The most important thing right now is that he is completely asymptomatic.  Meaning, he passed his neurological exams, he isn’t having headaches, no trouble finding words, no memory loss.  He is having no symptoms from having a tumor in the brain.  This is good.  The X factor in this equation is the BRAF.  It’s simply too new for anyone to say how it will affect prognosis.  It helps us that he is having some response to it.  Will it be enough to keep the cancer in his brain from continuing to grow?  No one knows.

In response to this news, Brian is upping his BRAF dose.  From 3 pills in the morning and 3 pills at night to 4 pills in the morning and three at night.  He was having the best response when he was at 4 and 4.  He was taken down because of the gout that isn’t gout.  So we’ve had a number of talks about utilizing diet to support the BRAF and I feel like I’m hitting home with Brian a little better.  He’s regularly drinking cherry juice and has noticed that this is helpful.  He’s got to cut out the soda (because that just wipes away the hard work of the cherry juice) and he’s got to add a salad to every day.  Getting these greens will help neutralize the uric acid created by the cancer toxins breaking down, and will ultimately ease the pain of the inflammation and the gout that isn’t gout.

When Dr. M was talking to us about prognosis he talked about the three things that Brian’s treatment always needed to focus on.  He reminded us that this cancer is highly unlikely to be curable (I would add, impossible). Because of that, we always need to focus on stabilizing the disease, maintaining the highest quality of life, and improving the length of survival.  Duly noted.

He also mentioned that doctors will usually keep recommending treatment until the prognosis gets down to “less than six months to live.”  He said that, at this point, doctors shift focus and talk about making the end as comfortable as possible and not putting yourself through treatment that has little chance of helping.  So I feel good that we are still talking about treatments.  In her last email to Brian Dr C wrote, “I will not stop fighting with you Brian.”