Am I old enough for a pillbox?

Here is a portion of my first 30 days of meds. Just a small copay of $800. I still prefer it to an Iv chemo. 

Ready, Set, Not Yet

I feel like I'm spending a lot of time preparing for this next phase to start!  I imagined that I would return to Seattle in January and then start radiation immediately.  It's been well over a month that we've been back and I still don't have a start date.  I called again today and they said they are in about stage 5 of my planning for radiation and there are about 5 more stages.  I don't know what that means, but they said they would call back next Tuesday.  We are trying to plan out rides and time frames and spring break and visitors and instead we are going to hurry up and sit still.

I bought a few hats, some from Amazon, some from the American Cancer society (I thought they might be softer and I figure they know what they are doing!).  I'm trying to squeeze in one last hair cut, but I don't know who to trust with a giant scar and scab on my scalp.  I've got books ready, note cards ready, and I'm trying to hold off on my Downton Abbey episodes so if I'm in bed I can watch them, but for now, I'm just waiting!

The GREAT news is that the results from my MRI are in and my doc says it is a perfect scan that shows as if the tumor was fully resected.  There is no evidence of new growth or of any tumor activity.  The MRI I had on January 3rd shows a brain that was likely enlarged from surgery and still very swollen, so this time around they can see much more clearly.  I'll have another MRI after the 6 weeks of radiation and that will give them a baseline to measure against throughout the course of chemo.  I felt so thankful and so relieved for these results!

Beautiful Things

If you're looking for a kids Bible, I can't recommend what my kids have enough.  Maeve is an early reader and LOVES the Early Readers Bible.  She has read the entire Old Testament and kept asking me when she would get to Jesus.  I told her she could skip ahead if she wanted to and she refused saying she had to go in order.  Well, finally last night she turned the page and it was the story "Jesus Came to Love Us" about the birth.  Her eyes lit up as if she had just won a prize in one of those waiting room claw games.  Her patience paid off.  

The hilarity of my kids right now is that they are pretty much running their own church, unknowingly.  They are competing over who is farther and what stories they know.  Maeve's stories have questions at the end and so they are holding little Bible studies every day.  Paul and I just keep looking at each other and smiling.  

Last night Noah was reading and asked to read in bed with me instead.  He crawled up in bed and said "I don't want to read the Bible anymore."  I asked why and he said "Because the next thing is the crucifixion and I don't want Jesus to die."  I reminded him that without death there is no resurrection and sometimes we have to go through hard things to fully understand beauty.  

He opened again this morning to Jesus turning the tables and we talked about righteous anger.... about how Jesus turns everything upside down and sometimes we need it in order to really see what is going on.  

As I was sitting here this morning looking at shower pans for the new house online, I had Pandora tuned to The Rend Collective and this song came on in the background:

I wasn't really paying attention to it until I heard over and over again that the dust is made into something beautiful and then I really connected with the words.  I know that God is and can and will make something so beautiful out of all of this dust and that no expects beauty to grow in a dead place but it is and it does.

There are certainly moments of despair and hopelessness as I read some of the terrible statistics that are out there and I watch as my whole life is reoriented and turned upside down, but I also see so much beauty forming and being planted.  And for all of it I am so grateful.

Beautiful Things

by Gungor

All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new
You make me new, You are making me new

Chemo Class and Resisting Routines

Yesterday I had to meet with the nurse practitioner at my oncologist's office to prepare to take my oral chemo. It was a pretty standard office visit.  Each time I go now, I have to do a neuro exam which involves some memory exercises, the ability to walk in a straight line touching heel to toe, knowing the date, and some strength tests to see if my left and right sides are balanced.   It's challenging to go to the appointments because you know that the people in the waiting room are likely going through some difficult health situations.  The neuro-oncology floor has a pretty exclusive guest list.

The nurse practitioner was great and very helpful.  Again, I can call her at anytime directly with any questions or concerns.

She filled out prescription requests for the chemo drug which is called Temodar and ordered them for me.  Since the medicine is very expensive the doctors have to try to get the orders in early in case insurance companies try to reject the requests.  The pills have to be taken on an empty stomach for absorption and I can't eat for an hour before or two hours after I take them.  Some people wait until bedtime to take them and some people take them in the morning and hold off on eating breakfast.  In addition to the Temodar I have to take Zofran for the nausea that will likely accompany it.  The doctor said that generally there is a correlation between how nauseous you were during pregnancy and how the medicine affects you.  I was very nauseous with both kids, but never really vomited.  The doctors can adjust the nausea meds if I feel sick so that the Temodar is not tolerable.  Another common and lovely side effect is severe constipation so I'll have to take laxatives to go with the chemo and the Zofran.  Lastly, I'll be on a prophylactic antibiotic to prevent infection.

The radiation will last for 6 weeks Monday-Friday, while the chemo will be the same six weeks, but 7 days a week.  This first round will be tough as it will be 42 days straight of chemo and then, when radiation and this round of chemo are done, I'll have a four week break from the chemo to let my body recover.  So, if all goes well I should have a little break in mid April.

I'm still taking the anti-seizure medicine which we thought was to prevent seizures, but the doc told us that it actually just reduces the risk.  During this time when the brain is still recovering from surgery and there is other activity targeting the brain, seizures are more likely.  They could be in less severe forms and may show up as a recurrent tingling on my left side or other repetitive symptoms, generally on the opposite side of the tumor.  We haven't noticed anything thus far, but we had a talk with the kids last night about how to use the emergency call buttons on our phones just in case.

We also had a mini-handwashing class for the kids which sounds funny, but once we get this show on the road, germs are going to become my enemy.  If the kids have runny noses, coughs, etc. they have to keep their distance.  They (and all guests) will have to wash their hands every time they come in the house and at the other obvious times as well.  Noah went to put a lime in my seltzer last night and his whole hand went in.  To begin to teach them about the transfer of germs we threw out the seltzer and the lime and got a fresh glass after Noah washed his hands.

I'll have blood drawn every Friday to keep an eye on my red and white blood cells and the doctor was clear that there won't likely be any surprises.  If my numbers are dropping it will be a slow and gradual process either up or down that we can watch and monitor.  In very rare situations people have to have blood transfusions.  I had blood drawn yesterday to do a base count and to have some numbers to start with.  If I don't tolerate the Temodar they can adjust the amount of chemo I am receiving to a point where I can tolerate it.

I'm in a weird place with all of this because for so much of this journey I haven't had a clue what was going on.  I would say from December 30th to mid January I just did what people told me to do.  I was drugged, recovering, sleepy, or exhausted and I just trusted that Paul and those around me were making good decisions.  My friend here who is going through his brain tumor resection had a month before his surgery to research and ponder and think about what might happen.  I can't say I think one is better than the other, but there really hasn't been too much idle time for me.

Today I went to UW for my follow up MRI scan to see how my brain looks post op and to also have a baseline before radiation begins.  I felt very different going in to this scan because for the first time I really felt aware.  I don't remember my last MRI on January 3rd or if I had any reactions to the dye. I was also  nervous because of my mask event last week.  When I was taken back for my scan I was so keenly aware of my Ash Wednesday thoughts as many other brain tumor patients were in the chairs around me, all hooked up and getting their contrast dye before their routine MRI scans.  I tried not to stare but I was also looking to get a sneak peek at how their hair loss looked.

And while I was sitting there the same thought kept going through my head... I don't want to. I felt like a three year old who doesn't want to eat her vegetables or put on her coat.  Some parenting book I read years ago said that we are all really three year olds who have learned how to properly suppress our emotions, and only let them out in acceptable ways.  I wanted to say no to the technicians and the lab techs.  Mostly, I don't want the hospital to be my routine.   The girl across from me was my age and so cheerful, joking about her veins and I knew her spirit was joyful and would be helpful in her journey, but for today I just wanted to cross my arms and pout (but I couldn't because of my IV).

So, I went back for my scan.  I listened to classical music which made me miss the power of the organ and the postlude and the choir.  I did fine.  No panic, no fear, no anxiety.  I prayed going in for the Lord's strength and peace and I was granted those blessings.

I have to call my doc in two days to have someone interpret the results of the MRI for me.

I'm thinking and praying a lot about disease and illness.  I'm reading about understanding or explaining how and why illness and disease enter our lives and contemplating the why of it all.  I'm not full of "why me" questions, but I think I'm more focused on being able to explain my peace with it all in case someone else is struggling or wants to know how I am reconciling it all.  I haven't been able to put my thoughts quite into words yet and I believe that wrestling and holding things in tension is healthy and helpful so maybe at some point I'll put it all down in writing.  My simple answer is based on good reformed theology -- that God is supreme and all knowing and we aren't.  And there are some things we aren't meant to know or explain.

But my good buddy Ann Voskamp (she doesn't know we are such good friends) still lingers in my thoughts.  In 1,000 gifts she shares...

“...life change comes when we receive life with thanks and ask for nothing to change.” 

Those are big big big words.  Some would say they are not the words that allowed David to beat Goliath, not the words that allowed Moses to get out of Egypt, not the words that have allowed the oppressed to find freedom, but I guess for me they are words of peace.  They are words that believe that God's got all of this in his control and my job is to give thanks for so many beautiful moments of faith and for God's spirit that lives in me and allows me to start a few new routines.  

Christmas and Easter

While I was still in PA, Kelsey was at school at Lancaster Theological Seminary, where I went to get my MDIV.  She came across my former theology professor, Dr. Barrett.  She told me he sent along greetings and to say hello.  He is a witty and funny guy and so I told her to ask him why God gave me a brain tumor for Christmas.  It was meant to be a humorous question and I was hoping he would have a quick and theological response that would make me smile.  I think, however, it threw him off a little, as he asked Kelsey for my email address instead of granting a response.  Sorry Dr. Barrett!

We were blessed to have Christmas together as a family and to have about a week of festivities before my seizure, but we still have unopened presents on the mantle and we just finished opening the last of our Christmas cards a few days ago.  Our coffee filter snowflakes are still taped to the window and so it is no surprise that lent creeped up on me extra quickly this year.

I've always enjoyed the seasons of a traditional church calendar.  Even though Advent and Lent aren't biblically mandated, I find it so refreshing to have a few weeks set aside to focus on particular biblical stories and to regroup my own thoughts and desires.

As I sat on the morning of Ash Wednesday looking through my regular devotions I couldn't help feeling like something was missing.  I knew I wouldn't get ashes this year and I certainly wouldn't be burning palms to make the ashes.  I wouldn't hear those powerful words that I love... from dust you have come and to dust you will return.  I wouldn't see the faces of parishioners who were looking deeply inward or answer the questions of children who stood wide eyed at the ritual.  I looked around at quite a few resources and devotions about lent and Ash Wednesday, calling for the confession of sin, for turning your life around, for handing over your vices to Jesus during this time and I really, truly felt oddly removed from it all.  I would never, ever say I am without sin, but my life lately hasn't left much time to be sinful.  I was trying to think of what behaviors I need to turn from (lack of patience, anger, frustration, doubt), but more than anything the Ash Wednesday readings were a reminder to me of our human frailty and I read them in a way as I have never read before.  Of course it is impossible for us to see the scriptures without interpreting through our life circumstances and it has always been easy for me to admit my shortcomings, as I have many, but instead of regretting my desires for worldly things or asking for forgiveness for behaviors I'm not proud of, I realized that this Lent my focus doesn't need to be on giving up or adding or even really changing, but on accepting and owning that I am but dust.  Dust that God chose to breathe life into.  Dust that God chose to give his love and joy and energy and spirit to and without God's spirit in me, I am nothing.  This brings me great joy and reminds me to be full of humility.

The Sunday before Lent in the lectionary is always the story of the Transfiguration.  In Luke 9, Jesus takes Peter, James and John up to the top of the mountain to pray with him. While they are there his face is transfigured and he becomes full of light.  The disciples were so mesmerized that they wanted to set up tents and stay in that moment.  I've always been told that this story is poised before Lent because it is such a mesmerizing mountaintop experience that it is to remind us of our own mountain top experiences and carry us through the valley of Lent.

I feel so intimately connected to all of this and to God's perfect timing as I truly feel great right now, surrounded by friends, in touch with so many people and loved by family and friends and perfectly enough, my radiation treatment will last just through the season of lent, likely to be finished right around Easter Sunday.  I'm so grateful for the resurrection to be on the horizon and for the reminder during this new and trying time that the joy of the resurrection is always waiting, never far, especially in scary and dark places -- in this season and in every season.

I'll never forget a lenten season at Rock Church when members carried very large boulders up to the chancel each Sunday as a reminder of the burdens we carry through life.  By the end of Lent the front of the church was so gray and heavy and represented to each of us all that weighs us down.  And then on Easter Sunday we placed all of the Easter flowers as if they had grown up through those boulders the whole time and our burdens were replaced with true beauty.  It takes a lot of faith and a lot of joy and a lot of trust to somehow see that the burdens are often part of the joy, but more importantly that the burdens, the boulders, the struggle, the death...they  never win.

In one of the rooms I was waiting in at the proton center, this sign was on the wall and I was struck by the ending... it cannot steal eternal life.  Amen!

Radiation planning

I've been a little anxious to get this show on the road, not because I want to go through radiation and chemo, but because I know that 5% of the tumor and it's buddies are still in my brain and I know that regrowth can happen quickly.  It would be highly unlikely that a tumor could have surfaced in the past 6 weeks but we didn't know the last one was there.  I called as soon as we returned home from Canada to get my appointments scheduled but I just left more voice mails.  Late Thursday afternoon I got a call that the Proton Therapy center (radiation) wanted me to come in at 9AM Friday morning.

Paul dropped me off early and then dropped the kids off and then he went to work.  I walked into a fabulous place that looked like a nice hotel and spa and I was unsure if I was in the right place!  There was a coffee bar, craft room, puzzle tables, a mini fridge, patio and more.  The receptionist took my picture and made a badge for me so that only I can go into the rooms that are for my treatment and so that they can keep track of everything.   I met with some people to sign a bunch of papers and then I met with my radiation oncologist, Dr. Rockhill again.  I was able to ask quite a few more questions and I feel a little more clued in to the radiation process.

I'm going to be receiving Proton radiation which is different than photon/electron radiation that most people receive.  Proton radiation has primarily been used in children over the past few years because it doesn't have as much residual damage to surrounding tissue.  Doctors had to fight to get proton therapy used for adults with the argument that no one really needs or benefits from surrounding tissues getting damaged.  Protons are heavier than electrons and therefore can be controlled more effectively.  With protons the dose can be higher because the treatment can be more specific to a very certain spot.  With photon radiation the photons are lighter and travel more easily, thus affecting more  of the surrounding tissue.  Two months ago the most I new about protons and electrons was the minimal science I had in high school  Electrons were the ones on the outside of the diagram on the test!

In any case, I'll go Monday-Friday for 6 weeks to receive this high level dose of protons directed at the exact spot where my brain tumor was resected.  I knew that I would have to wear a mask/helmet to be sure that my face was in the exact same position for the treatment each time.

I was directed to a room where two technicians were working on preparing the medical materials to make my mask.  It was sort of like screens from a window that were put in a hot water bath and molded around my face.  That part really didn't bother me at all, but because of the location of my tumor the doctor wanted me to lie on my stomach and so I would need a front and back mask.  They completed this process but once I was lying on my stomach with both the front and back masks on,  they clamped it all together and I started to panic.  I couldn't lift my head, open my mouth, turn my head and I felt really trapped.  My eyes had to stay closed so I couldn't see.  I kept taking deep breaths through my nose, but it wasn't enough and I couldn't proceed with the process.  I tried 4 or 5 times, but I just couldn't do it.  They called in the doctor and he helped to calm me down and changed the protocol for me so that I could just have the mask on my front and be sitting up, able to see in front of me.  I felt a lot calmer and able to deal with it.  The next option was to take some calming medicine to get met through it.  I did fine with the mask on the front and was able to complete the CT scan.

The room was complete with many different sets of lasers in the ceiling that had to line up with different parts of my head and body.  The technicians drew on my face to make sure that the lasers were lined up accurately.

After I finished with my mask, my CT scan, and my meeting with the doctor, I met with my nurse.  She will be with me at every treatment and I can call her anytime 24 hours a day.  

The next meeting was with the financial department to discuss the payment for proton therapy. This type of treatment is often rejected by insurance companies in favor of the photon therapy because photon therapy has been around a lot longer and is cheaper. If I didn't have insurance, the proton treatment for 6 weeks would be $42,000.  Because we have insurance and have already met our deductibles for the year we won't pay anything.  Thank.  God.  Thank.  God.  

At this point I had been at the center for over 4 hours and I was emotionally and physically spent.  I called Paul to get me and he grabbed me some lunch and left work to pick me up.  

I learned a lot during this day at the center.  I found out that I will lose hair, but only in a small circle where the protons go in.  From the front I'll look exactly the same.  To most people I'll likely look the same from the back as well.  If I put my hair in a pony tail you'll never see the missing hair spot.  This hair is likely not to grow back (perhaps ever).  I'll have to wear a hat for quite some time because this area will be hyper sensitive to any sunlight.  The hair will come out in a clump around week 2 but won't keep coming out and won't be an ongoing hair loss concern.  

I found out that the type of tumor I have and the genetic markers I have really do give me a very good prognosis.  With the radiation and chemo together we have a great chance of killing all of the "sleeper" cells and though a stage three brain tumor is malignant and aggressive, the doctor said that what I have is a "well behaved" tumor which means that it is generally very responsive to treatment. 

I asked again about the cancer/brain tumor question and the radiation oncologist kind of confirmed what I thought.  Brain tumors are not considered cancer by definition because they can not spread to other places.  Typical or traditional cancer can start anywhere in the body and spread or grow anywhere else in the body.  Brain tumors cannot grow in any other area of the body.  They are however considered like cancer because of how aggressive and malignant they can be.  They are treated in the same way as cancer and therefore often the terms brain tumor and brain cancer can be interchanged.  What I was wrong about is that when it is a stage 4 or a glioblastoma that doesn't change how it acts or reacts.  It doesn't "become" cancer as it will never end up in my liver or pancreas, but it just describes how it progresses in the brain.  

The doctor also explained the long term implications of the radiation treatment and shared that common long term side effects are memory loss, forgetfulness, confusion, and trouble in chaotic situations.  These are all struggles I have identified since the brain surgery but he said that they will likely continue slowly.  Many people never know whether these side effects are just part of the aging process in general or from radiation treatment.  He assured me, however, that the side effects from radiation are much less dangerous than not having radiation and increasing the risk of another tumor.  

So, I went home with my head spinning.  I should get a call in the next week about when my first radiation appointment will be.  On Tuesday I meet with the neuoroncologist to discuss how to take chemo and its side effects.  On Wednesday I have an MRI to follow up from the surgery and get an idea of how things are looking in my brain.  

Please pray for those meetings and scans and pray that I will find some peace as the next whirlwind begins.  

Love and logic

I haven't read it, but apparently there is a parenting book called Love and Logic about allowing children to make choices and then letting them deal with the natural consequences. If a child wants to go out without a coat then they learn that it's cold without a coat. If they don't eat their food they learn that they are hungry without dinner. We have been having a sock battle in our house for many months. Maeve refuses to wear any socks except this one pair we bought for the first day of school.  I don't do laundry that often and so she will wear them for many days in a row with no qualms and refuse any other socks. I'm pretty sure the socks can walk and talk now but it really doesn't do her any harm, I suppose. She held her feet up the other night and I could see her bare skin through the remainder of the socks! Her loving grandparents looked high and low to find a new pair that is exactly the same and when I asked her to wear them she said "I'm just not ready yet, Mom. 

I guess we all hold on to things that maybe it's time to let go of. I suppose when it's time she'll be ready! 

Bribery

My little one is sly and smart. She wanted candy for breakfast and I told her it was too early for candy. She slid this note to me...

If you have to wait...

The proton therapy center has a really nice waiting room. They said to expect 3-4 hours for my consultation. There's a play room a craft room, a coffee bar and I have a badge. I'm legit. 

Weekend Respite, Eh?

We had planned to go away for President's Day weekend for a while.  We were hoping San Diego, maybe Hawaii an then when everything happened over Christmas we decided to skip any plans because we didn't know what would be going on for us at this time. Once we figured treatments wouldn't start yet, we tried to find something last minute and booked a house on the Pacific Ocean in British Colombia, Canada.  The goal was to relax and get our minds off of all of our decisions.

What we didn't anticipate was that customs would take an hour, we couldn't use our cell phones in Canada and everything would be closed in this beach town for winter!!!

At least the weather here was so nice we could have the sun roof open!

Of course we figured our way around these things eventually.

The house was very nice and had magnificent views to wake up to each morning.  The sunshine was so plentiful that the kids begged to close the curtains because it was making them too hot!  Sunday we woke up, made chocolate chip pancakes and played some board games.  (This game is called Robot Turtle and it's an easy way to teach kids about computer programming!)

The kids played on the front yard and practiced ball room dancing...

And we all just reveled in the mountains and the water

 We wanted to explore a little bit and drove to a tourist town with some hiking to find that it was all pretty vacant for the winter and quite windy.  All the way along the drive however was a magnificent snow capped mountain view graced by the pacific coast.  We found a little tavern to have lunch and watch the waterfront views.

On the way back we stopped at a store and bought some local seafood and headed home to enjoy the hot tub!

  We laid around some more the next day, watched some movies and decided to try to find a place to have dinner.  On the drive to a tuna restaurant we saw some cool black tailed deer alongside the road.

And this road sign that the Canadians put up in my honor:

That restaurant was also closed and so we drove down to a waterfront place that was a little nicer.  I ran in to check the menu and the specials were celery ravoli, duck and lamb.  I knew there was no way my kids were eating there so we agreed to grab some pizza.  On the way back to the car we took a glance toward the water and saw the most amazing sunset I've ever seen setting over an area known as Whiffen Spit.  We walked out on to the spit and just gazed at the magnificent colors in the sky.  It was absolutely breathtaking!

We got some pizza takeout and headed home to snuggle up together.

The next day we walked down to the beach from our house and enjoyed time playing and climbing.  It was a rocky beach and so Noah and Maeve (and Paul) began climbing the cliffs and rocks and made me very nervous.  They enjoyed skipping stones and throwing large rocks in the water making loud kerplunk sounds.  Noah found a crab skeleton, some large muscle shells and lots of other goodies.

There was a ton of driftwood everywhere and we happened upon this driftwood seesaw that we had a blast with!

On Tuesday morning we packed up and began the ride home via Victoria.  I brought along some nicer clothes so that we could have high tea at the Fairmont Empress, where Queen Elizabeth, Rudyard Kipling and other notables have enjoyed tea over the years.  It was fabulous!!!  

The rest of the ride home was graced with views of Mount Baker and perfect blue skies.  It was so gorgeous that I kept telling Paul I saw angels in the skies traveling with us.

Paul and I did spend some time in the afternoon one day poring through clinical study options, treatment schedules and diagrams from our architect for the new house.  We decided a few hours of grown up stuff was more than enough and we quickly resigned ourselves to a dvd of love story movies a friend gave us!

Signs

While we were on the beach in Sooke, I kept seeing these cool stones that had lines and markings on them. I kept looking for one that had a letter on it or a symbol of some sort.  I was looking for a stone to keep that would have meaning for me and remind me of our trip and the harder I searched the more impossible it became to find a stone that was special to me.  I started to become really frustrated by the process and it kept throwing me mentally to different places in my life where I was looking for signs.  I remember looking at colleges asking God to show me clearly where I was supposed to go.  While I was on a tour at Dickinson I found out that their mascot was a Red Devil and I nearly broke out in tears because I thought that was a sign that I didn't belong there.  When I was in my early twenties I spent an inordinate amount of time looking for signs about who I should marry and when God would send the right "one".  It seems like for every choice in my life I've spent a lot of time waiting for God to send me some clear sign.  I have always wanted to know what choices other people made and their outcomes.  I remember researching babies with reflux and how it affects their adult life, trying to learn about what ADHD looks like in a two year old, studying every decision until I felt that I had exhausted the options, but really I think I would just exhaust myself.  I knew as I was patrolling the beach that God doesn't work on demand and wouldn't provide a special rock just because I wanted one.  And yet, for some reason, knowing in my heart my answers weren't in rocks, I still found myself searching. I've been reading about other brain tumor patients and their journeys, looking for signs of what my journey will look like, looking for comparisons.  I've been reading forums, connecting with new people, trying to figure out what's next for me and for my family and yet I think for the most part this is idleness or misplaced energy.  In John 4 Jesus tells the man looking for his son to be healed that if he doesn't get a sign he will never believe and though that is hardly true for me.... i've never been one to make "deals" with God, I knew that those rocks meant nothing to me and that all of the hours searching for signs to assure me of one thing or another were likely wasted moments that could have been spent full of joy and laughter.  On the flip side, I've always been a big believer in noticing moments.  When we were in Iceland years ago we saw lots of stacked rocks and looked them up to find that they were Cairns -- stacked rocks to mark a time or a place.  Throughout the Bible and throughout history people have stopped where they were to take note of a moment in time, to build an altar, to give thanskgiving on a hill, to take a mental note of a special moment they didn't want to forget.

For us this weekend was a chosen moment to laugh and play as a family because we know that the next few months at least will be challenging for us.

We looked through all of our options, had our doctors send us their research and studies, had friends in the medical field read the journals for us and help us to be fully informed. We decided on a newer type of radiation called proton therapy which is normally only used for children and will be a fight with our insurance,  but will reduce the amount of radiation that can harm the healthy cells in my brain.  The downside of this radiation is that it will most likely cause hair loss.  It will last 6 weeks and be done concurrently with the chemo treatment.  For chemotherapy we chose a pill form that has few side effects and though it doesn't have as many completed clinical trials the research shows it to be highly effective and may likely soon be the first line of treatment for brain tumors.  This pill is taken 5 days out of every 28 and may need to be taken for up to 2 years.  During radiation and during those 5 day cycles (and the 5-7 days afterward) I will likely be out of commission, tired, and lethargic.  The great news is that the pill can be taken anywhere and doesn't need a port or an IV.  Many people on this pill treatment still work full time and lead fully normal lives.  I'm happy to have this option that will allow me to help keep our family life as normal as possible.

I go in tomorrow for a radiation planning meeting to be fitted for a mask that will allow them to deliver the radiation at the same place each time.  Next week I will go in for a chemo "class" at my oncologist's office before I can start taking the pill and I'm hoping to have a schedule soon of when all of this will start.

In my Bible study this morning they asked how they could pray for me and I responded that we are really in a "lull" right now.  We are post surgery and enjoying these joyful times, trying to soak up the energy I have with normalcy.  We really don't know what's ahead as none of us have ever been through this or anything like it.  So, our prayer is really to just have fun.. to stop searching and to trust that God knows what is next and has it all under control.

I have noticed that my vision seems to have improved quite a bit this week.  I did walk into the doorway tonight pretty hard but that was the first time in a while.  I feel more confident picking things up on my left side and less unsure of myself visually.  I am still struggling with evening exhaustion and it's hard because those hours are the times when our family needs more of my attention.  When both kids need homework help, dishes need to be done and it's time to get ready for bed, all of the voices and the noise are confusing and challenging to me in a way that is very different than before.  I often need to retreat and have silence and that is also often when headaches occur. But I also have to take a step back and remind myself that I am still just over a month from brain surgery!

I am ever so grateful for your continued prayers for my healing, for no recurrence of the tumor, for smooth treatments with few side effects, and if there are side effects that I will be at peace with it all. I love getting your notes and cards and just your message of friendship, love and comfort.  If I don't respond, know that it is often because there are multiple things happening and I can no longer multi-task as I did before (Paul says I can finally understand how he hasn't been able to multi-task all of these years!) I am unable to talk to a child, answer a text and think about something else, let alone do something else.  I have to really focus on any one task at hand which is an amazing blessing of a change of pace. I am committed to being present to my kids and my husband and sometimes I have to catch up on other things later on and that is okay.

Phew.. i just realized how long this is!  Sorry!!! I hope you feel informed!  It's late here on the west coast and I'm off to bed.  Love and thanks and joy and peace... good night!

Windshield Wipers Please

We had our appointments yesterday at UW.  But first, Paul and I headed to a little dive called the Northlake Tavern and had some monster pizza thing that was super good.  It's close to the hospital and I think I might lose Paul to this place!  Our appointment was at 2:30 but we weren't seen until about 4pm.  Thank goodness people were covering the kids and taking care of our evening activities.

The first doctor was the neuro-oncologist.  He confirmed what we heard at Penn that I need radiation followed by chemo.  I have a lot of things in my favor.  Apparently there are two genetic markers that are in my favor.  Paul remembered this, but I don't remember hearing that -- I only recall the one I shared about last week, but hey it's good news!  We talked with him quite a while and were able to ask questions, but I feel like I don't even really know what questions to be asking.

We were given many options.  We have several choices for the type of radiation and several choices for the type of chemotherapy.  All of the choices have pluses and minuses that we have to weigh very carefully and obviously none of them come with a guarantee.  Different treatments have different side effects that range from virtually none,  to severe side effects for the duration of treatment.  Some of the treatments have been tested in clinical trials and some haven't.  The tricky part about the trials is that it takes 17 years to do a trial.  This means getting enough people who have the requirements for the trial to agree to rigorous monitoring for 17 years.  Most people are diagnosed with brain tumors in their 40s or 50s so if they begin a trial at that age the results won't be in for 17 years after that.  It takes a lot of money to do the trials and a lot of time and study.  So in the time they are doing the trial several new drugs and treatments arise that will then need to be studied.  It is impossible for the doctors to know the outcomes of the new drugs and treatments until they have been through the studies which takes a long time.  It's a lot to process. With good reason, the FDA can't approve the new drugs until they are proven effective and the doctors rely heavily on studies from other countries where the introduction of new drugs isn't as heavily regulated.

One of the radiation treatments is currently in a trial and one of the chemo treatments is currently in a trial, so there are not concrete results for two of my options.  All that the doctors can say is how they see patients responding during treatment and go with instincts and intuition. We do have completed studies for one radiation treatment and one chemo treatment.

I thought we would go into the appointment and hear the doctor's recommendation for what the best plan for me is.  In fact there is no "best" plan. We have to choose what plan we would like to follow and which course we would like to take.

The options for the chemo treatments vary from 9 months to 2 years.

After the nuero-oncologistwas finished,  a radiation oncologist resident came in and talked to us about radiation treatment options.  I will have to do radiation for 6 weeks and that will start relatively soon, perhaps even next week.  I'll be fitted with a helmet that will be molded around my head so that the radiation goes in the same exact spot each time.  Many people react well to radiation and don't show many side effects.  Others do feel sick.  Some lose their hair, others don't.  Most people lose their hair at the site where the radiation goes in and because the radiation will go in my head, I will likely lose hair at the very least in a circular area of my skull.  I'm thinking bald man might be a good look for me:) Again, it also depends on the type of radiation we choose and how my body responds to it.

We have about a week to decide on which treatments we want, which questions we still have to ask, and to study the trial outcomes to see statistics and results.

The kids have a long weekend for President's Day and so we decided to take this opportunity to get away and relax.  We're headed over the border to a house on the water in Sooke, CA, right on the Pacific Ocean.  Paul is trying to convince the kids to swim in the ocean (it's going to be freezing!).   We will all welcome a few days away of peace and quiet, nature and each other and we'll practice our best Canadian accents.

So I guess in some ways it feels like we can't even see the road, that everything is unclear.  I could use some new wiper blades, some fog lights... perhaps an ice scraper because I really can't see what I should do or what is next.  But, we will make decisions and we will move forward and we will figure this out too!  We've come this far by faith for sure.

Today I ask special prayers for my new friend Bill who has his brain surgery this morning here in Seattle.  I am thanking God for a new friend as well who I've been able to communicate with who has been through two brain surgeries.  (A friend from church camp was a mutual friend and introduced us).  She has an 8 year old and 5 year old as well.  I am grateful for people who I can ask about the decisions they made and how their lives have changed.  And of course I am soo soo soo grateful for all of you.  I appreciate that you read and share because it gives me great comfort to know I am in your thoughts and prayers.  I thank God for all of your help with meals and with the kids.  I'm aware that we are at the beginning of the journey and so as I learn to ask for help I am grateful to know there are people around me who are willing to do whatever they can.  Today I also ask for prayers for the kids.  They have been such troopers through all of this so far, but I know that it isn't easy for them either.   They are showing great care for me, they are trying to give me space when I need to rest and of course I can see a little bit of uncertainty in their eyes.

Without my direction they have both been immersed in their Bibles.  Maeve has a new Bible she can read on her own and she carries it everywhere.  She took it to school and was reading it to the other kids at free time (I couldn't help but laugh a little...) She was reading about Moses and Pharaoh and the Bible said "all of Moses' people... she looked at me and said "Mom, they are NOT Moses' people.  All the people are God's people, aren't they?"  I smiled and enjoyed her disagreeing with the text.  She's feisty like me in so many ways!  Noah asked last night if I would find him the story of the man who lost his strength when he lost his hair.  I had his comic book Bible open to the story of Samson this morning and he was reading intently.  I tried to gently coax out of him why he wanted to read that story and he said" It's just a cool story."

So keep us all in prayer this weekend... that we can laugh and play and snuggle and bake and celebrate love.  Our love for each other and God's love for us.

A chaperoned field trip

Last week Kelsey accompanied me back to Seattle.  Seriously, it was the worst weather week since we've been here!  We did get to do a few touristy things.  

We headed to the Pike Market and I showed her the fish throwing.  We got to to to the first Starbucks at Pike Place.

We enjoyed some Maple Bacon donuts at the market and this was their tip jar:

We made a trip to the gum wall and enjoyed broken souls and gum brains. 

We made it to the cheese place my aunt told me about and got to watch them make cheese right in  front of us, eat fresh curds and savor amazing mac and cheese.  

We enjoyed an amazing caramel latte on a rainy afternoon and then baristas came around with FREE warm CHOCOLATE CAKE just because.  They call it gift cake.  Amazing.  

We took a morning and headed to the Starbucks Reserve and roastery where you can see the beans being roasted and watch them make your drinks freshly.  They have select drinks and espresso you can only get here.  It was fantastic.

We finished our week off with a fantastic dinner at Ivar's Salmon house right on the water with a perfect night time view of the city.  It was rainy so the picture isn't very clear.  Maeve didn't want to sit in a a chair and wanted a bench (the restaurant only had chairs) but we made a good meal of the shrimp and brie stuffed salmon despite her attempts to distract us!

Tumor Prayer Party

Sunday morning we woke up fairly late but still made it to church on time, though a little sluggish.  It was small group Sunday and Maeve was scared to go to Sunday School so I sat in the coffee bar and chatted with one of the pastors.  She asked me a bunch of questions about my situation and we talked about having lunch soon.  She then invited me to join in a prayer group at 11:45 for another member of the church named Bill.  While I was home I noticed on the church email chain that someone else had also been diagnosed with a brain tumor and I was surprised but didn't know the name.  As it turns out, this man is also 36 and was just diagnosed Jan. 2.  He's a local teacher and was having different seizures that came in the form of hallucinations.  After a biopsy they found that he had a grade 2, 7-10 cm. tumor on the right side of his brain.  They were deciding this week on whether to operate or start with radiation (they decided on surgery this Thursday)  At the benediction the pastor invited anyone who wanted to come into a room afterward to pray with Bill and his wife.  About 15-20 people gathered, read scripture, laid hands on and prayed for them and for the doctors and for all that he would undergo this week.  It was so incredibly stunning to be sitting with someone and praying for him and with him as he was about to undergo the surgery that I am recovering from.  I wanted to be  able to show him how "normal" I am just a month out of surgery and see if he had any questions.  It was so comforting to have someone else who knows all the terminology and who is going through similar appointments and concerns.  He knew about the genetic markers and the types of mixed tumors and the treatments....  it was as if he and I both knew Arabic and we were the only ones.  I feel so blessed to be in the same community and to somehow have a "partner" or "friend" to travel this journey with in a way I never expected.  Most definitely, the greater blessing was to be a part of this circle of prayer, most of whom were strangers to Paul and I and to know that they were lifting Bill and Paul and I up so fervently and with so much hope and love.  How powerful to grasp his shoulder and to be in a spirit of prayer together,  surrounded by saints and witnesses. It was one of the finest moments of "church" I have been a part of.


One thing I was explaining to our pastor Sunday is something that I think many of you might be confused about as well.

Brain tumors aren't "cancer."  Brain tumors are brain tumors.  What I have is a primary brain tumor which means it originates in the brain and can't exist outside of the brain.  It is some tissue and cells in the brain that just decided to go wacky.  A secondary brain tumor is cancer that starts somewhere else and travels to the brain.  Bone cancer can travel to the brain and become brain cancer.  A brain tumor can't travel to my lungs or liver or colon.  Cancer can travel from the lungs or liver or colon to anywhere else in the body.

Cancer however is defined as malignant growth of cells.  And there are cells growing in my brain that are malignant.  I know this is confusing (it has taken me a little while to get a handle on it as well).  So, the doctors are planning on trying to eradicate the 5% of brain tumor they didn't get out during surgery.  Over the next few months they will hit my body pretty hard with radiation and chemo to try their best to get rid of those cells.  And then we will do scans to see if the brain tumor returns or grows back or if there is a new tumor.  If and/or when it returns it may come back in a different form that could be more malignant.  If that happens and it is upgraded to a higher level, it is at that point (I think) that it is considered cancer. Many people have shared that they know people in similar situations who have never had a recurrence and that is our hope and prayer.  And please, if you pray, pray first and specifically that the tumor doesn't return.

So if this is as clear as mud to you, join the club!

We meet tomorrow with our new neuro-oncologist and radio-oncologist and team of doctors who will handle my case.  The appointment is at 3pm PST and I appreciate your prayers at that time to keep my heart focused where it needs to be.  We will update you after these appointments when we are ready.

I know that for many of you, you have only seen me as a bubbly extrovert, but there is a side to me that is quiet and deeply private and introverted.  I am open and willing to share, but it takes me time to process things and be at peace.  A lack of updates doesn't mean we won't tell you what is going on, it means we will share when we are ready.  I know that is hard to hear but please please don't take any of this personally.  We LOVE you deeply.  We are grateful and joyfully overwhelmed by your prayers and kind gestures and cards and notes and acts of service and love, but we have to take this one step at a time. The first step is to talk and pray with each other before we are comfortable talking and sharing with others.

Some of you have asked for our new address at the house we purchased.  We are staying at the 3rd ave. address until the end of May while we do work on the house across the street.  I'll be sure to share the new address when we are living there or receiving mail there.  Thank you so much for your flowers and cards and notes.  Each one is very special and meaningful to me.

On Cats and waiting until later

This morning I put on my beloved Roomba vacuum (named Rosie after the Jetsons) as I walked out of the door to take the kids to school.  This has been a regular part of my routine in the morning for years.  When I came home less than ten minutes later I smelled a strong smell of vomit and started looking around to see where the cats might have puked.  I couldn't find it anywhere but the smell kept getting worse, until I made my away across the room to see that Rosie had decided to try to vacuum up a pile of cat poop that the cats had conveniently left right outside of the cat box.  Rosie then proceeded to randomly carry and smear that special gift all over the floor as she made her way through the house.  Joy of all joys.  I couldn't help but laugh and sent Paul a text.  I swore Noah told him there was an accident, but none of us could remember for sure if it was made known.  Paul insisted I leave it alone and he would get it when he got home, but the smell... oh.. the smell.  I couldn't.  So I threw out the mat and started mopping the floor.  I realized it was also inside the Roomba so I had to take apart Rosie piece by piece to de-poop her.  I grabbed some Qtips and clorox wipes and set about carefully cleaning out all of the ridges and gaps that had been filled with nastiness.

It was then that I knew I was really sick.  I was enjoying it!  No one without a brain tumor could possibly enjoy cleaning cat poo out of a vacuum cleaner early in the morning.  It's no secret that I like to clean.  I have liked it for years... ever since Noah was a baby it made me feel "in control" to have the house clean.  If things were messy and he was crying it multiplied everything and made me feel helpless.  Cleaning has been a way for me to see progress.  In my career you don't know the fruits of your labor, perhaps ever.  With children you don't know if you are doing a great job or just employing  a therapist for the next 40 years.  There is no measurable outcome for ministry or for parenting.  You just have to hope and pray you are giving it your all and that someday the fruits of your labor will bring a harvest of plenty.  But cleaning....  after you soak a chocolate ice cream stain in Oxy Clean, it's gone!  After the drawers are organized they are so beautiful to look at when you open them.  Even if the reward is only temporary, you can stand back and look at it and know that it is done, even for a few minutes.

So, as I was personally confused about the smile on my face during this morning's task, all I could think about was how messed up I was to be enjoying this.  I have very little control over much these days.  I was mad at the dinner table the other night and walked away in a huff which caused me to hit all three doors square on my left shoulder before I made it to my bedroom. I was trying to make mac and cheese for the kids on Sunday and I went to pour the milk into the pot (on my left) and poured it right into the burner (admit it, you're laughing!) And somehow... it's all okay.

I'd be lying if I said I walk around full of sunshine and chirping birds every day.  I am walking around and there is sunshine and there are chirping birds (not to mention mid 50s temperatures, daffodils blooming and very green grass), but it's a time of great emotional ups and downs.  I oscillate between a fullness of joy that I can't put into words because my life is so complete.  Seriously, I've said a bazillion times (long before this Christmas) that I have everything I have ever wanted in life and a million times more than that.  I have struggled for years with wondering when I would be "content" and sure.. I would still love to be thinner, have better skin, and live by the beach, but never before have I been so aware of all that is so good around me.

So I could have left Rosie for Paul when he got home, but I slowly and methodically worked my way through each crevice cleaning it out so that I could use my beloved vacuum again.  There have been so many times in my life when I was literally racing out the door, gasping for a second to catch up, to be on time, to finish what I had left undone and to spend a few hours in the mundane, drinking coffee listening to my  new favorite band The Decemberists, I was able to just revel in the glory of the ordinary.

I feel physically very good.  I walked for quite a while yesterday.  I'm getting up in the morning on time without feeling so drained and sluggish.  I am getting dressed instead of staying in pajamas.  I'm very focused on eating foods with antioxidants, making kale and blueberry smoothies (which I also did  pre-Christmas).  I'm spending time daily reading my devotions and my Bible and the books that some of you have given me.  I found a random verse marked in my Bible that I didn't mark and I don't know who did... but it was Ephesians 1:18

I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance...

Maybe it was you?

No matter what it was a fun find!

And that is my prayer, that my heart's eyes will remain open to the hope that I am called to, even when I am not enjoying the mess that is all around.  

Because there are always days and moments when a poop filled vacuum would be enough to send anyone over the edge.  And most days it takes so much less than that to trigger our anger and our fear.  Goodness knows catching up on Parenthood has been wrecking me and triggering all kinds of messes (I only have one more episode left and I can't leave it undone even if it is going to be a slobberfest).  But,  I have to take time and make time to be intentional.  I used to have a sweet,  sweet woman named O'Rita in my Tuesday morning Bible study who would doze off and then apologize profusely.  We did a study on prayer and I gave the group a list of quotes about prayer that I can't find anymore.  But I remember that there was one that said no matter how many times your mind wanders during prayer, each time you return and refocus, God is so happy to welcome you back.  I believe that is true for so much of our lives.  We fall off, we wander, we get sidetracked, but no matter how many times we head down a path we didn't intend or even want to go, God welcomes us back each time we turn around.  You know when you turn a child's head away from something they shouldn't see so that they focus on something different-- be it a tv show or an adult conversation or whatever, I will need God to lift my heart back up when it heads to places God doesn't intend it to go.  

So today I can give thanks for a random post it note in my Bible, for a husband who was willing to clean up the cat poo after he got home from work, for calm and peace and for so much more.  

I didn't wait for later and honestly, I never really have been one to wait.  I've got today and it's great.