Week 3

I'm at the beginning of the half way week which is pretty exciting!!!  I still feel really good.  The mask has become routine.  I've stopped taking the anxiety meds before treatment.  My labs came back normal.  I'm experiencing a little bit of dizziness, as if I'm on a boat and I need to hold on.  The doctor said that it is likely a little bit of hearing loss from the radiation which is causing me to feel unbalanced.  Paul and I got out last weekend and enjoyed our school's annual auction. It was a fancy night out and we had a great time.  It was really fun to do something different and spend time in our new community.  We didn't get any good pictures, but Paul wore a paisley shirt and a blue checkered sport coat that he picked out himself! I was very impressed.

We continue to feel overwhelmed with gratitude by those around us who are helping in every way with childcare, meals, and just friendship.  We're seeing some stress on the kids, likely from being shuttled to a different house or doctor every day.  They are eating foods cooked in different homes most nights and they are quickly learning that different households function in different ways. Noah also found out that the little boy who sits directly across from him lost his father to pancreatic cancer.  I wish I could just hold them in my arms all day and protect them from everything.   We have been solidly able to develop a new routine each night where I have a good chunk of alone time with each child.  We talk about school and play and all sorts of things.  In this space the kids can ask or say whatever they need to and it has been good for them to get their fears out.  Previously, Paul and I would split up bedtime and he would take one child and I would take the other, but now I sit in my bed and Maeve comes in and reads with me and prays with me and then she goes to bed.  When she's finished, Noah comes in and does the same and then goes to bed on his own.  Noah benefits particularly from this time because he is really wrestling with all sorts of things.  They say that the "tween" years are now from 8-12.  This new term is to define the transition from child to teen and so children start to desire new responsibilities and "older" treatment, but then quickly and often revert to childlike behavior.  Noah is noticing his clothing and his hair and asking lots of questions about money and careers and so he is processing a world he is suddenly aware of and trying to make sense of  the chaos in our home.  It's a lot for him and we would appreciate that you especially keep him in  your prayers.

The flip side is that the kids are cheerfully busy.  They have 2 outdoor recesses every day at school and we stay after school nearly every day for an hour of play time.  When they come home they spend the majority of their time playing outside with the neighbors making up grand schemes of imagination.  We couldn't be more blessed with the kids in our neighborhood... without ever crossing a street the kids are surrounded by other children who are in their same classes.  It reminds me so much of the time I spent growing up playing with my neighbors.  On Sunday afternoon our couch had 6 kids on it giggling about silly things and Paul and I looked on full of joy.  I always wanted a big house so that there was room for anyone to come and stay or for us to have fun parties and gatherings.  This might be a tiny house, but our "open door" policy is alive as ever and all of the kids and many adults walk in and out without knocking.

So, at the end of the day their little bodies are tired and they fall right to sleep.  For all of this I am grateful.

My hair is playing games with me, sending warning signs that tell me any day now my transformation into a middle aged monk will occur.  With every touch of my head 20 or 30 strands come out.  I had really hoped that I would make it through the auction with my hair and I did, so I am grateful for that.

AND... I have so much to look forward to and to celebrate.....

In just a few days my parents will be here for Easter and we are all so excited!  I hope the glorious weather holds out for them.  Paul installed a new shower and tiled the walls of the bathroom at the new house this week (he redid the plumbing too... seriously there isn't much he can't do!).  Our electrician finished rewiring the new house so now it won't burn down (yes it was that bad). The gas company finally turned the gas on and so we have running hot water.  Our architecture plans are finished for now and we will begin to solicit bids from builders to see what the remodel might cost  and to see if we will have to scale back on our project.

I hope this holy week is meaningful for you and that Easter Sunday brings all of the joy of new life and new hope deep within your soul.

Polio Vaccine

I received quite a few emails and texts tonight about this episode of 60 minutes.  It's about 15 minutes long, but it is a fascinating Phase 1 trial for Stage 4 brain tumors.  Duke University is injecting Polio into the tumors and the body's immune system turns on the polio and kills the tumors.  It's a bit nerve-wracking for me to watch, but exciting at the same time.  If you have some time, watch it!

http://www.cbsnews.com/news/polio-cancer-treatment-duke-university-60-minutes-scott-pelley/

We weren't meant to carry it all...

Today's devotion was right on target:

I can’t begin to count how many times I’ve taken what feels like the weight of the world on my shoulders.

 I do this in every area of life, from trying to control a situation or set of circumstances—like the stress of household finances or my child’s grades and school performance—to taking on friends’ hardships, but life doesn’t work that way, does it?

We were never meant to carry the weight of the world on our shoulders. It cripples and disappoints, creating discouragement, sleepless nights, and emotional turmoil. Heaping this weight on ourselves bears anger, resentment, fear, anxiety, stress, comparison, and jealousy—and that awful feeling that we can’t be everything to everyone, even though we try and try and try. I am tired and worn out just writing this!

This kind of heavy living is not the way of our Lord. Jesus said this:

“Come to Me, all who are weary and heavy-laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls. For My yoke is easy and My burden is light.”- Matthew 11:28-30, NASB

Jesus knew we would live under the daily weight of our idols of self-entitlement and our illusions of control, trying to play savior to ourselves and others. He knew the burdens of life would have crushing effects, so He taught and challenged His disciples to follow His lead, practicing the disciplines that keep us in relationship with God.

I'm about to head into a marathon of doctors appointments tonight, Friday night.  I meet with my radiation oncologist on Friday, my radiation nurse meets with my privately on Friday to review my symptoms, my therapists meet with me to analyze the radiation treatment and then I go through my normal radiation appointment.  Then I come home to take the pile of chemo pills.  I think they will review my first round of blood work as well tonight.

The good news is that I'm just about finished with week 2.  I tried to explain to a new friend this week how I'm feeling because she was wondering if I really feel great or if it's a show that I put on to keep myself together.  I told her that I really do feel great, but everything is in waves.  I went for a long run this week in the sunshine and I went shopping downtown and I felt really great.  And then today I came home from the store and I physically couldn't stay up and I had to lie down which ended up in a 3 hour nap.  

Some mothers and families here in our neighborhood have really rallied around us and while I really want to say no to the help and I really want to do it all myself, when meatloaf, spinach salad, and fresh bread from the bakery showed up on my door today I was oh so grateful.  Another new friend is taking the kids tonight to watch a movie while we go to our appointments and yet another friend will have them next Tuesday as I go to 3:45 and 6:45 appointments on opposite ends of town.  So, most of the time I feel absolutely fantastic and then I hit a wall and I rest.  And when I do feel well I am going to continue to get out and exercise and walk and run and shop and do things that give me strength and energy because I need that fuel to keep trudging through these appointments.  

I feel so odd at this point in my life, almost as if I'm an outsider looking in.  For my pastoral colleagues this is the busiest week of the year coming up, a marathon of services and expectations and the culmination of everything we believe and I won't be leading or teaching or serving at any worship services. There is definitely an emptiness surrounding that piece in my heart right now.  I remember working so hard at this point last year on a Good Friday service that blended modern poetry with the last words of Jesus, only to have the air conditioning unit in the sanctuary come on and blow out all of the candles I had so carefully placed in line. I spent my holy week with the preschoolers making resurrection rolls in the church basement and I watched their shocked little faces as they saw that the tomb was empty.  I haven't found my bin of Easter baskets in our basement yet and I'll be the recipient of the generosity of another amazing friend who offered to prepare the Easter meal.  The weariness and the joy are interwoven, but I don't think that is unique to my circumstances.  There is great weariness in caring for a newborn and inexpressible joy.  There is great weariness in a routine workweek and a satisfaction of completion.  How can I not find great joy in such an outpouring of love and care for our family, even in the middle of such a trying time?

And so, with each hesitant comb of my hair I am grateful that my symptoms have been so mild and I'll humbly accept the generosity of my community. How odd that so much of my being wishes it wasn't this way and yet so much of me knows that this is exactly how life was meant to be... full of love and support and care and concern for each other... genuine and pure, ever reminded that we weren't meant to carry it all.  

1/6 of the way

I made it through the first week of treatment pretty easily.  A few bouts of nausea, but nothing serious.  I don't feel too tired yet, though everyone says its cumulative.

It's a strange place to be in because physically I feel really well.  I've been spending as much time outside as I can, trying to exercise and stay busy.  The radiation treatment is in the evening each night, this week at 6:05.  I'm not sure why they change times.  This part is incredibly difficult.  6pm is a difficult time for every family, let alone trying to get across town with two kids in tow.  Most days the kids have just been coming with us to radiation.  There are some toys there and a chess set and the treatments go really quickly. I'm still struggling to get the mask on but I can talk myself through it and just mentally pretend I'm somewhere else.  The techs let the kids come back one day to see the actual radiation machine and let them touch my mask so that eased their fears a little bit.

When I'm finished with a treatment my head feels hot, as if I was sitting next to an oven (which I guess I was) and last night in particular it felt as though there were flames bursting out of my head.  I just came home last night and went to bed with a bag of frozen blueberries on my head.  I'm having some minor headaches and some strange dizziness, but overall, 90% of the day I feel great.  Paul is running on empty, trying to work all day, race home to get me to treatment and then get home to get the kids homework done and get them to bed.  At about 10pm he sits down to figure out what the next day has in store.  Work has been incredibly flexible with him and allowed him a temporary parking spot to be able to get me to treatments.

I feel so lucky to have sailed through this beginning treatment, but every time I take a shower I fear that it will be the day when my hair will fall out.  The doctor said it would be between week 2 and 3, give or take.  He said it will come out in one giant chunk and then I will have a bald spot on my head that will likely not grow back or will grow back very slowly.  This is because the type of radiation I'm getting is extremely high dose and it kills all of the cells it comes in contact with.  The hair follicles will likely be dead in the area of treatment. I've got some cute hats lined up, but I still am dreading the moment when I'm holding that clump of hair in my head.  5% of people don't lose any hair, so I suppose I could hope to be in that number, but I'm not holding my breath!!!!

We've had a lot of insurance issues this week so I'm spending a lot of time on that.  We have to use special pharmacies now and we have to fight for some of the treatments to be covered.  It's very confusing and overwhelming, but we'll figure it all out eventually.  It is very time consuming and emotionally consuming.

Next week I'll meet with my neuro oncologist again to do a mid-treatment exam and to look over my blood work to see if my white blood cells are holding up okay.  I'm hoping at this treatment they will discuss the pathology discrepancy again and we'll know more about how long I'll be on the chemo pills.

The social worker at the radiation center gave me some books for the kids that have markers and coloring pages titled "My mom has cancer" and so we finally sat down with the kids and talked to them about the differences between the brain tumor and brain cancer (semantics really), but Noah has particularly been afraid of the word cancer and so I felt that we needed to put it out there before it comes out somewhere else and he is on the defensive.  He was pretty upset but we talked him through it and he seemed okay after we were all done.  Maeve is still doing fine and doesn't seem to be worried at all, which I am really grateful for.

So, at this point I am doing much better physically than I thought I would be and I thank God for that.   I'm hoping to figure out some way to balance the needs of the kids and the house and of my thoughts. I don't want to be idle because then my thoughts wander, but if I'm too busy than I feel like I don't have time to process.

Thank you for your love and support, as always.....

Off to treatment!

Kerry's visit

Kerry and I met at Oxford Pres. back in 2009.  Maeve was just born, Noah was in preschool at the church and I was doing Christian Ed. work.  Kerry was pregnant with her third and her daughter was in the same preschool class as Noah.  She was an active member of the church and we enjoyed lots of children's programs together, bible schools, women's retreats and women's bible studies.  We always shared our joy for our children, our families, our patient husbands, and for our common strong willed demeanors.  When the kids were little we would trade off babysitting while I was at the church or while Kerry was running her own garden and landscaping business.  We became quickly very close and really enjoyed each other.  Kerry's husband took a job in Columbus, Ohio and she moved from Oxford.  Shortly thereafter, we moved to Downingtown, but we stayed very close through all of the transitions.  Every time she came home to visit family we would get together and I made the trip out to Columbus from PA one time (sadly only that once!).  We can always pick up exactly where we have left off and it never feels as though any time has passed.

This past Christmas we were both going to be in PA but we both had jam packed schedules around the holiday.  We managed to squeeze in a fabulous and really meaningful dinner together at Harvest Grill without the kids or husbands on December 29th, the day before my seizures.  I remember Kerry coming to the hospital and just saying over and over again how grateful she was that we made the time to get together.

Currently, Kerry is still living in Columbus, but is studying full time in a landscape architecture program, mothering three children and trying to balance a million things.  As soon as I got back to Seattle she sent a message telling me she was coming for her spring break.  I didn't even know the dates, where I would be in treatment or anything, but she had already booked her flight.  I was grateful that she made all of the decisions and I didn't have to plan or think about it.

She flew in last Sunday and it was pouring rain!!!  I swear that I keep telling everyone it doesn't rain much here and then when visitors come it rains a lot!

We had a nice meal at the 5 Spot Sunday evening and then just stayed at home.  She and Paul put their heads together with all the medicines and treatment schedules because I was having a really hard time understanding where I needed to go and when.

Monday morning she went with me to my first treatment and then we drove Paul to work and headed to the Olympic Sculpture Garden.  In her program at Ohio State she had studied and heard about many different landscape designs in Seattle and so I got to explore new things that I wouldn't have known about otherwise.  We parked the car and walked through the garden and then walked up the street through the Pike Place Market.

The weather was gorgeous and we were basking in the sunshine.  We enjoyed a great Salmon Salad at The Market Grill and perused the vendors.  I took her to the gum wall and she was totally grossed out (germaphobe!).  We had some yummy ice cream in the market and then it was time to get the kids.

One of her landscape design sights was Gasworks park, located on the north shore of Lake Union.  We got takeout fish and chips from Ivar's and sat along the water and enjoyed the beautiful evening.

Back Story: Gasworks is a 20 acre point on Lake Union that was cleared in 1906 to construct a plant to manufacture gas from coal - later converted to crude oil. Import of natural gas in the 1950's made the plant obsolete. The city acquired the site for a park in 1962. The park was opened to the public in 1975. The boiler house has been converted to a picnic shelter with tables, fire grills and an open area. The former exhauster-compressor building, now a children's play barn, features a maze of brightly painted machinery.

This park is made from these old structures, blended with very pastoral green hills and pathways.  It's a great blend of a historic time in the city's history and a currently very vibrant and active city -- people were running and playing all through the park.  Plus it has an amazing view of the city.

  

One the way home it was really clear and so we made a quick stop at the Kerry Park viewpoint which is a standard tourist spot that has great views of Mt. Rainier and the city. It also happened to be named after Kerry.  She got a great view of the mountain and the city. 

I was feeling really good at this point.  I wasn't having really any side effects from the chemo or radiation and I was really enjoying all of the things we were doing!  My radiation schedule was a little different the first week so sometimes it was at night and sometimes it wasn't.  

On Tuesday Kerry and I went over to the University of Washington to see the gardens around the University.  It was breathtaking to see so many cherry trees in bloom in the quad.  We walked many paths strewn with cherry blossom leaves and really enjoyed how beautiful UW was.  

Tuesday was also St. Patrick's Day so we had corned beef and cabbage at the Hilltop Ale House in Queen Anne and then headed to get the kids from school.  Tuesday evening Kerry stayed with the kids while Paul took me to radiation.

Wednesday was Kerry's last full day and so we took the ferry to Bainbridge Island to see The Bloedel Reserve which is an internationally renowned public garden and forest preserve.  It was beautiful to walk through the gardens and enjoy all that was in bloom.  

The birch path:

The Japanese garden:

Selfie in front of an amazing root system on a fallen tree:

The moss gardens:

The reflecting pool:

We raced home from Bainbridge and stopped to grab some sushi for dinner before getting the kids.  I had a few bites before heading to radiation again but when we got home I just fell right asleep.  Kerry and Paul stayed up and talked about the new house and watched a movie.  I think I slept a full 12 hours!

Thursday morning we only had a little bit of time before Kerry had to get to the airport so we walked around on Queen Anne Ave getting some souvenirs and we enjoyed one last yummy meal at a Thai place.  

Kerry kept saying her intentions were to come and make a ton of meals and freeze them for me and to clean and do all of these things for me.  She found out quickly that our tiny house doesn't support extra anything!  There really wasn't room in the freezer for anything and just keeping up with the chaos of the kids takes most of our time.  She was incredibly helpful with dishes and entertaining the kids and just keeping me chatting about fun things.  It was a vacation for me as well, even if it was the first week of treatment, because we had so much fun walking and looking at trees and flowers and eating and laughing and just being friends.  Once again I find myself immersed in blessings, surrounded by love.  When Kerry booked that trip back in January we had no idea this would be my first week.  We had no idea how I would be feeling.  But God knew.  God knew that I would need this support on this exact week and that she was the right person to come and simultaneously keep me moving while taking care of me.  Again and again I am so grateful.  God's provision is always enough and in perfect timing.  

Sleepy Eyes

It's been a long week and there is a lot to reflect on, but it's hard to keep my eyes open tonight.

I really wanted to give a quick update so that you all don't think I'm doing terribly, because I'm not!

I also had a fabulous friend here from Ohio who was an enormous help.  She kept me busy busy and that allowed me to focus on our friendship and on nature and not on dreary things.  It's hard to believe that I'm not even a week through, but I'm close to being a week through so I guess that is good news.

On Monday morning Paul and Kerry came with me and waited during my first treatment.  It went pretty quickly.  I still struggled when the mask came out and I started to tear up immediately.  I reminded myself from the beginning to breathe deeply.  I remember some meditation that stuck in my head to breathe in all that is God and to breathe out all that is not of God.  So I just kept breathing in and out and it seemed to help.  They did turn music on and it happened to be Bob Marley which was funny because I just mentioned a few minutes earlier that I'm not a Bob Marley fan.  However, the first song was "don't worry about a thing because every little thing is going to be alright..."  I felt that those were pretty cheerful lyrics to start this thing off.  I remember the song changing to Redemption Song and I was listening closely to those words about redemption wondering what God was going to do through me and through this experience, knowing that God can redeem anything.  That was also a comforting thought for me.  At one point, one of the songs was talking about feeling loved and that is when I felt the tears slide down my cheeks because I just feel so loved and surrounded right now, knowing that God is with me even inside that horrible mask.  But I also realized at that point that the tears were futile because I can't wipe them away and so they kind of got stuck! I made a mental note that they were unproductive and that seemed to send them on their way.

All of the radiation days since then have been less emotional and relatively routine.  They have to lift me and move me on the table in different ways because they are treating me in two angles.  I don't feel much but they kind of open this crazy vault in the wall and slip on some metal plate that is designed for me specifically and allows the right amount of radiation to come out at the right place.  There are lasers coming from all sides of the room to be sure that my body is always in perfect position.

On Sunday and Monday we were all sorts of confused trying to organize all of the different pills and days and appointments.  It is quite complicated with when I can eat and when I need to be sure I'm finished eating.  I have to take pills in the morning and evening and then also before radiation.  I can't eat two hours before chemo or one hour after chemo.  I have radiation Monday through Friday.  I have to have blood drawn ever Monday.  I have to meet with my radiation oncologist every Friday. I have to take my seizure meds twelve hours apart.  It is overwhelming to say the least.

So, we worked hard to figure it all out and Paul put reminders in my phone for appointments and medicines and we are just all working together to make sure we don't miss anything.

On Monday I really didn't feel anything from radiation or chemo.  I woke up Tuesday with a teeny bit of nausea but was able to eat fine.  By Wednesday I was tanked after radiation and went to bed around 7 PM and slept until 8 the next morning.  Radiation causes me feel heat on my scalp, as if it was sun burned in the area where the treatment is hitting, but it really isn't bothersome.  The chemo has caused intermittent moments of nausea but nothing more than that so far.  We know that the radiation is cumulative and that by the end I will feel more effects.  We aren't sure if the chemo is cumulative or not, i.e. if I will feel more sick to my stomach as time goes on.  But for these first few days it hasn't been too bad and for that I am really truly grateful.

Thank you so much for all of your prayers and well wishes and thoughts as I begin.  I read on Shereadstruth the other day a devotion about getting to Easter and the author likened it to a long road trip that seems like a good idea when you leave but when you are a few hours in seems like the longest journey of your life.  Her child liked to encourage them all in the car to play a mental game called rocket boost...

"Enter my brilliant and blessed son, Oliver. I guess he was probably five at the time he invented the “Rocket Boost”, and it is now everyone’s favorite way to travel. The Rocket Boost is simple: close your eyes, force yourself to sleep, and next thing you know, you’ve completely slept through Kentucky! (Or Connecticut, or wherever it is you’re passing through.) Rocket Boosting is the best basic travel trick we know; even I have been known to sneak a Rocket Boost in the passenger seat from time to time!"

She encourages the readers to set their face upon Jerusalem during this long and contemplative time of lent and I feel so connected to that concept.   My treatment won't be done by Easter and I won't be "cured" by then either, but I don't believe that there is really an "end" date for many of the ailments of our lives.  Instead we have to set our face upon that which we know is true and propel our lives toward that goal, toward that end that we know is so much fuller and greater and more beautiful than the circumstances of our lives... even if the circumstances are just ordinary days and mundane stuff.. it is quite reassuring to know that when we set our face upon Jerusalem that we lead lives that reflect resurrection, not just in lent or on Easter Sunday, but in all that we do.  


When the days drew near for him to be taken up, he set his face to go to Jerusalem.
Luke 9:51, ESV

I really believe and know that through all of that trial and all of that awful pain and tragedy that Jesus looked it in the eye and knew that he was not limited by it or confined by it, but set free by it.  And to me that is an eternal reminder not to worry about a thing, because every little thing is going to be all right!!!

Practice, good news and seeking to be worthy

Friday was my big practice round for radiation.  I go back and forth between being totally fine and being totally worried.  Paul and I had a great lunch in Phinney Ridge and then headed to the proton center. I took my calming medicine as prescribed, but when I got to the center I didn't feel calm at all.   They took me right back and put me on the machine bed and brought out my mask.  I almost lost it at that point and wanted to walk out but I just kept telling myself that the medicine hadn't kicked in yet. As they clamped me in to position I kept feeling a great desire to get out.  I knew that if I raised my hand they would stop and take the mask off.  I kept trying to tell myself that it would be over soon and rationalize how long I could make it before begging to get out. I also knew that if I took a break we would just have to start all over again and that would prolong the process.  After a few rounds of arguing with myself about what to do I was able to recenter my thoughts and stop fighting with my inner monologue and I reminded myself to ask for help.  I channeled my thoughts asking God for peace and strength and protection and endurance.  Over and over, just simple prayers.. God, please be with me.  God, please give me peace.  God, please give me strength.

It was a really long time that I was in there.  30-45 minutes at least.  I couldn't swallow.. my mouth was dry and I was really struggling, but I managed to make it through and that alone was a huge victory for me.  The therapists told me that it was extra long on Friday because they were trying to make everything line up perfectly so that on Monday it is short and sweet.   I hope that is the case.  Even if it isn't, I made it through this one so I can make it through another.

After practice was finally over I had an appointment with my radiation oncologist and with my radiation nurse.

The radiation doctor wanted to share with me that his team of pathologists requested slides from UPenn to review my tumor themselves.  They took a long look at the tumor and they agreed with the pathologists at Upenn that it is a mixed tumor -- part oligo and part astrocytoma.   The astrocytoma part is the more aggressive of the brain tumor matter and the less well behaved part of the tumor.  What the UW team found however, was that the astrocytoma part of the tumor was significantly smaller than the oligo part.  The reason my tumor is classified as Grade 3 is because of the astrocytoma part.  What Dr. Rockhill wanted to share with me is that his path team went back and forth with the Penn path team many times to analyze these slides.  The astrocytoma part is such a small percentage of the tumor that IF they could change the Grade to a 2, he would call it a Grade 2.  They can't change the grade because there is still astrocytoma tissue there, but it is likely that my tumor will behave more like a Grade 2 oligo tumor and less like a Grade 3 mixed tumor.

Perhaps the calming medicine was just kicking in or perhaps I have been on overload for the past few months but I just sat there, silent.  I had no reaction at all.  The doctor said that it would be a good time for a deep breath or a smile or something, but I just sat, somewhat confused, somewhat joyful.  I asked cautiously, "This is good news, right?" He shared that for a Grade 2 tumor, they don't generally recommend chemotherapy, but instead radiation alone.  At this point it was our choice whether to go ahead with the chemo or not.

As I said to my mom later... you think it's like going in for a sinus infection and they give you antibiotics and tell you what to do, but all of these questions and gray areas and possibilities and choices are so insanely difficult and overwhelming.  We had been told from the beginning that we would need to do both radiation and chemo and now a few days before chemo is to begin we have the option to say no.  Paul and I looked at each other and clearly agreed that if chemo for 6 weeks orally is going to be helpful than it is worth it.  Plus, we know that the chemo and radiation boost each other and so they are mutually beneficial.  What the doctor said is that if for some reason I have a terrible time with the chemo, which most people don't, I can choose to stop taking it. Even if I stop within the next six weeks and the tumor regrows I can take this same pill again later on.

This entire process from the very beginning has been so surreal and these moments were just added to the list of things that don't seem to make sense.

So, I suppose nothing has really changed and our course is still the same.  The one difference is that the doctor said that at the end of the 6 weeks they will do another MRI to check for regrowth.  At that point I was supposed to have one month off and then begin a cycle of chemo again.  Depending on what my team of doctors thinks at that point they may suggest that I don't need to restart the chemo. We don't quite have our hopes up for that yet, but it is an exciting thought.  It's such a weird place to be because no one wants to go through chemo and yet you don't want to risk not treating brain tumor cells and inhibiting them from growing.

In the car on the way home I said to Paul that it would be awesome to know somehow that the clean MRI and the current outcomes were a direct result of prayer.  I have no doubt that there was a barrage of prayer on my behalf on Friday and the days prior. Your notes and emails and cards and messages and the flowers on my doorstep when I returned home are constant reminders that I am not alone on earth in this journey, but more importantly that I am part of something so much greater that has nothing to do with what is going on in these wacky cells in my brain.

My bible study on Thursday lifted me up so beautifully in prayer and surrounded me physically and spiritually with joy and prayers for healing, in such a palpable way that  I continue to sit in awe at what the body of Christ looks like.

On Thursday we studied the wedding banquet in Matthew 22.  The feast had been prepared and all the finest things were ready and the guests were too busy to attend.  We all wrestled with the dark imagery in the parable, but I was reminded of how God prepares the best for us and we often settle for so much less.

It came into my thoughts on Friday afternoon in the kitchen somehow about worthiness.  I was mulling over that banquet and all of the things that so many people have done for us and I just kept thinking that I want to be worthy of all of this.  I want my life somehow to show that I don't take any bit of this generosity for granted.  My neighbor offered to make the kids and Paul's lunches for the next few weeks and others offered to watch the kids during radiation and the list of offers goes on and on and in my head I just kept asking God to help me lead a life that is worthy of all of this outpouring.  The banquet reminded me that the invitations have already gone out and the BEST things have already been set aside for me and that God is so excited to be with me and there is nothing else that I need to do, but I do constantly want to strive to lead a life that is reflective of how amazing my blessings are and how grateful I am for all that has been bestowed upon me.  I truly want to be worthy of my blessings.

It's just one more day before this prolonged process begins and my pill box is ready.

Please continue to pray that the tumor does not regrow.  Pray that the first week of chemo and radiation go smoothly.  Pray that my side effects are minimal.  Pray that my children are full of peace and not a sense of fear.  Pray that Paul can find the space to deal with work and holding us all together and to work through his own fears and thoughts, pray that God's name will continue to be glorified in this process and that eternal and unending joy will fill all of our lives with the peace that passes understanding.  Pray that we will be worthy of our calling and lead lives that show that we desire what God has already prepared for us.

Will it hurt?

Paul and Noah are away at boy scout camp so Maeve and I have been enjoying a weekend of leisure. Late lunch at the diner, nail salons, and lots of snuggles, not to mention struggles with perler beads and my desire to organize an incessant amount of doll clothing.  Maeve lobbied hard for a super girl movie and double dessert.  I won the discussion about what to toss out of the overflowing craft closet.  Alas, two days of girl time are fabulous, but at bedtime tonight we were both really missing the guys.

Maeve was lamenting that she hasn't gotten a chance to go to the school guidance counselor as Noah has and that she has lots of questions.  I told her, as always, that she can ask me her questions.  She sat quietly for a long time and said, "well... I really only have one question.  Will the medicines hurt you?  I don't want anything to hurt you, ever." I went through the procedures and asked if she wanted to come with me one evening and she said that she did.  She is far from understanding long term effects or processing what might happen, but even so, she seemed placated that this round of medicine is short term and might not be much more than mommy's belly hurting or a little extra sleepiness.

So a few extra cuddles and some kisses placated her unrest.

On the calendar in ink

I finally got a confirmation call this morning that my first "practice" treatment will be this Friday afternoon at 1pm.  From then on, my treatments will be Monday-Friday at 6:45PM.  I tear up pretty easily these days and then I have to talk myself out of it.  My first reaction wasn't a good one, imagining missing the glorious spring evenings and the fun laughter we have at dinner while I am in a giant hard plastic bubble with my mask on.  But my rational brain kicked in and reminded me that this means Paul can be with me and drive me and that I can be out and about during the day time and that when my family and friends are here we can go an do fun touristy things during the day as I have energy.  I'll probably miss most bedtimes for the next six weeks but my kids are getting older and they can stay up later. I'm sure I can go in when I get home and snuggle with them.  I know in my logical brain (wait, is that part still there?!) that it will all work out.

Throughout lent my daily devotions have been from the book of Lamentations.  It's not a place most Christians spend a lot of time because it isn't full of grace and mercy and it isn't full of Jesus.  It's mostly fully of angry people who feel abandoned and complain a lot.

For the record, I don't feel abandoned... at all.  I don't feel angry at God.  When I get wrapped up in my feelings, I ask mostly for God's protection and healing and hope.  I ask for fear to be cast out.  I ask for the things I know to be true to be my focus and my reality.  The last thing I want is for people to think that I sit around morbidly and cry all day.   Certainly I cry, but usually it is in brief little moments and then something amazing happens and I am once again full of joy and laughter.

Todays devotion was particularly humbling for me and timely.

Some excerpts:



(from the author....not me!)

Actually for clarity's sake, the rest of this is from the author (in italics) of the devotion and I just underlined what resonates with me.

I recently learned that I’m pregnant. It’s my fourth pregnancy, our fifth child, and yet only one of our children lives on earth. This pregnancy was a surprise, but even more surprising have been the emotions I feel toward God right now. I know He loves me, but I find myself wondering. Like the writer of Lamentations, I’m standing in the wreckage of what could have been, but isn’t—and I’m questioning aloud if God is here.

“If you let this child die, I will never forgive you. Never believe in you again. How can you claim you are sovereign if you continually let this happen to us?”

So my prayers are weak and unbelieving. Distant. Filtered. 

What resonated with me.....

I avoid confessing my anger and my hurt. My own sinfulness delights in this withdrawal from God to near silence. Filtering my prayers and pleas, my hopes and fears, means allowing my human nature to take back over. Not bringing my true emotions into the light is just another way of delaying what I know I need to do.

I need to repent. Even here in this moment— especially here. I am angry (my words)... that this is all a reality for me or for anyone. 

 I know He hears me. And I know He is here.

So like the poet, I turn back to God with all of me—even the angry, confused and weary parts.

“Let us search out and examine our ways,and turn back to the Lord.Let us lift up our hearts and our handsto God in heaven”- Lamentations 3:40-41

Sometimes, it’s just all we have left to wearily “lift our hearts and our hands to God in heaven.” We all are sinners, regardless of the circumstances we’re walking through. We live in a broken world where awful things happen, and we don’t get to choose what happens to us. But the choice we have is this: what we will do when we realize how much God loves us? 

Do we love someone simply because they save us from the uncomfortable?

Does our Lord love us this way?

Paul reminds us how to strengthen our faith and turn to God in times of trial:

“… ‘My grace is sufficient for you, for my power is made perfect in weakness.’”

- 2 Corinthians 12: 7-9

Paul pleads with the Lord. He keeps bringing his pain back to God—not hiding it from Him—so that God can administer grace once more.

 I don’t need to draw lines, set boundaries, or attempt to control any outcome. I need to repent of these things, allowing the Holy Spirit to bend my will to the Lord’s. Knowing my Savior also suffered, I accept His perfect “grace upon grace” in the midst of the chaos and confusion we will all experience.

Our pain and our emotions are real, but so is our God. His grace is enough.

“Prayer is the breath of the new man, drawing in the air of mercy in petitions, and returning it in praises; it proves and maintains the spiritual life.”- Matthew Henry

See, my little emotional rant is over and I can calmly remind myself of God's mercy and steadfast love.  I can remind myself that I am never alone and that I know that God hears all of you and hears me and knows exactly what I need.  

So on Friday, I'll practice.  On Monday I'll begin.  And I'll list the millions of things to be thankful for and know, please know, that your names are all on my long, long list...

Tree Boxes and left overs

There are so many things I have noticed since my tumor that I never noticed before.  One is that public landscaping is often dilapidated and not kept up to speed.  I can't say I blame anyone because trees keep growing and roots keep maturing and that causes upheaval in sidewalks.  However, I can't say I really noticed how difficult these kind of things could be if some of my senses were not up to par.  It happened a few weeks ago when Paul and I were walking around Ballard.  One particular part of the sidewalk that was boxing in a tree was significantly lower than the sidewalk itself.  It was late and I was just walking along holding Paul's hand when I fell into the well in the sidewalk that the tree was housed in.  The tree was on my left and I couldn't see the depth difference on my left side.  I recovered pretty quickly and we switched sides on our walk.  However, yesterday when we were walking in Fremont I was again taken aback by a tree well on the sidewalk.  This one caused my ankle to twist  and for me to loose my balance upon which I then  got tangled under one of the branches and fell pretty hard.  I couldn't see the depth difference or the root.  Sweet Noah ran to me and tried to help me up and out of my embarrassment and frustration I pushed him away and told him to leave me alone.  I think I said exactly "I don't need your help, I'm fine." He has been particularly sensitive about me and I immediately apologized profusely and felt terrible about how I reacted.  I couldn't shake how bad I felt about the whole thing.  I kept trying to explain how sorry I was and he kept saying it was okay and that he understood.  I think it shook me up so much because I want to be fine.  I want to not need help.  I want to not have these episodes.  I want everything to be okay.  It was different somehow when I would fall down all the time before out of lack of coordination.  Because then I thought I really was fine, just a little clumsy. 

And I can't really figure out why this certain old memory of a devotion lodged itself in my heart yesterday when this all happened... It was the line.. "there are no leftovers.." that kept lingering in my frustration.  

From A Tree Full of Angels by Macina Wiederker

"the secret to daily life is this......there are no leftovers...

...There is nothing --  no thing, no person, no experience, no thought, not joy, or pain that cannot be harvested and used for nourishment on our journey to God.  

"What I am suggesting here is that everything in life is a stepping stone to holiness if only you recognize that you do have within you the grace to be present in each moment.  Your presence is something you can choose to give or not give.  Every experience, every thought, every word, every person in your life is a part of a larger picture of your growth..."

I can just so vividly recall myself pushing him away from me, full of self pity and walking away to pout.  I allowed my own desires and pride to push my child away in a way that caused me so vividly to see how unwilling I am to be humbled and to allow others to help me and most of all to allow God to use me.  I really want to be fully self sufficient and I guess for most of my life so far I believed that I was.  But I'm not.  I never was.  I never will be.  And I don't want to aspire to be.  I want to continue to learn to be honest and vulnerable and true and I need to desire that more than I desire to have it all together. 

I remember reading that devotion about a year ago when I was short on time and in a harried state most of the time.  I remember feeling so moved that God could use even the little bit of energy I had left or that God could use the million times I lost my temper and that the parts that don't go perfectly aren't tossed out or left to grow mold because with God there are no leftovers.  He can use it all for his glory and for joy. That even the ugly moments can be redeemed.  And so I notice a lot more now.  

The Beach in March

Our decision for the sunny day was to rally up some local friends and head to Discovery Park which is an old military base on the coast in Washington.  It has a lot of hiking trails, sandy areas, cliffs, and a fun beach filled with driftwood.  We wanted someplace for the kids to be active and run freely without constant supervision.  It was the perfect choice.  The sun was strong and the sky was gorgeous.  Mt. Rainier, The Olympics and Mt. Baker were visible.  Ferries were going by.  The kids played for 5 or 6 hours in the rocks, building forts, playing in the water and just amusing themselves in nature.  We played frisbee and packed picnics and just reveled in the most beautiful March day.

That's Mt. Baker in the distance covered in snow.

There were lots of sailboats out, canoes, kayaks and paddle boarding.  

Springtime and Sunshine

I was determined to do something fun this weekend because the weather was supposed to be outstanding and because I wanted to have one more great outing before treatment began.  Saturday morning we had some errands to run but then we headed to the Fremont Brewing company which was right on the Elliot bay and watched the boats go by and enjoyed the sunshine.  We had not yet seen a Seattle landmark known as the Fremont Troll and so we decided to hunt that treasure.   Hidden under a giant overpass is this enormous cement troll who is rumored to come to life at night.

The kids climbed and played on the troll for a good long while.

Some history:

The Troll is a mixed media colossal statue, located on N. 36th Street at Troll Avenue N., under the north end of the George Washington Memorial Bridge (also known as the Aurora Bridge). It is clutching an actual Volkswagen Beetle, as if it had just swiped it from the roadway above. The vehicle has a California license plate.The Troll was sculpted by four local artists: Steve Badanes, Will Martin, Donna Walter, and Ross Whitehead. He is interactive—visitors are encouraged to clamber on him or try to poke out his one good eye (a hubcap). The Troll is 5.5 m (18 ft) high, weighs 6,000 kg (13,000 lb), and is made of steel rebar, wire, and concrete.^[2]

The segment of Aurora Avenue North under the bridge, running downhill from the Troll to North 34th Street was renamed "Troll Avenue" in its honor in 2005.  The Seattle drugstore chain Bartell Drugs released a commemorative Fremont Troll Chia Pet in 2011 to celebrate the Troll's 21st birthday.

The piece was the winner of a competition sponsored by the Fremont Arts Council in 1990, in part with the goal of rehabilitating the area under the bridge, which was becoming a dumping ground and haven for drug dealers. It was built later that same year. The idea of a troll living under a bridge is derived from the Scandinavian (Norwegian) fairytale Three Billy Goats Gruff.

Beginning on Blaine

We finalized the purchase of the short sale across the street while we were home in January.  We were just able to get the electric turned on for various reasons, but even though we have power now the wiring is so old and terrible that it isn't really safe.  We had an electrician come out and do some minor repairs and we have some estimates to get things up and running quickly.  The house was also very full of junk and nasty old things that we wanted nothing to do with.  We got some bids to clean out the trash that were insanely high and so we spent last Sunday afternoon cleaning out the garbage and had a junk hauling company come and take it away.  I think every car stopped to look at what was going on because the curb looked so awful!

The house really  needs a lot of work, but again today another house came on the market that was much smaller for $300K more than we paid.  

This is the master bedroom(we removed all of the really, really gross carpeting.)  The fireplace will stay in a new updated format.  We also found some amazing copies of The Seattle Times from 1925 under the rug!

I personally think the hardwood underneath is very cool and I love the colors, but there are huge sections missing and it's really just a mess so it will have to go.

Here's our curb announcement to the neighbors that we arrived.

We went in again this weekend and painted a little bit (many of the walls are going to be demolished) and the kids helped us out.

We are almost finished working with the architect on the plans for renovation.  After that is done the general contractor will give us definite pricing and then we will see how long it will all take.  We can stay in our rental house until at the very least May 31 and we can extend it a little if we need to because he won't be ready to demolish our house quite that early.