School

It was part of the plan to keep the kids out of school until we find a house and move in.  We get corporate housing for two months in Manhattan and we felt that it would be educational to explore this great city and all of the culture, art and museums.  When else do you get to live in Manhattan for two months, rent free?!

The kids are convinced they are being "home schooled" which is a pretty funny idea.  I have been making them do work and they have to read and write every day. 

A few days ago I had them watch the Gorsuch Supreme Court Justice Confirmation hearings and we explored the three branches of government, learned about the balance of power, veto and a very basic outline of how a law is made.  We had a really great time exploring all of the topics and they are just eager little sponges.

Today we picked up some small sketch books and they decorated the covers.  Inside they have written about what they have done each day, adding pictures, thoughts and feelings to this whole process.  

I'm not sure if I'm home school mom material, but for a short time, it's really fun!

All Clear

My two year appointment went well.  The MRI was shorter which I attribute to the doctor requesting less of an in depth look (and to save my body from the extra radiation).  The doctor looked through everything and said it was fine.  It never looks fine to me as there are large white blob like sections on the scans but he assured me that it is scar tissue.  I asked how they know the difference between scar tissue and tumor and he said they don't.  Great.  In any case, they look for other factors like a change in shape of the tissue, the folds of the brain showing pressure, or changes in my vision, balance and abilities.  My white blood cells still aren't completely up to snuff, but as he said -- they have been much much worse.  They decided to move my appointments out to three months instead of two.  All of these signs are very encouraging and are the exact words you would want to hear.


Despite all of this, I never seem to leave the appointments feeling a sense of relief.  I always harbor this small voice that thinks that they missed something or that I saw something on the scan that they didn't (as if I have a clue what I am looking at!).  I wonder if anyone who has been through a cancer diagnosis every really feels a complete sense of freedom or a complete release of fear.

Once I am back in reality, away from the hospital, I do forget again that I've been through all of this and I don't replay those days of surgery, recovery and treatment over in my head.  I live separately from that experience.

Though I never bump into walls anymore and the left handed vision episodes are very sporadic, one of the pieces that still lingers in my life is the ability to piece together mental puzzles.  I'm not sure how to explain it fully, but I can't organize my thoughts the way I used to be able to do.  I have to physically draw out how things relate to each other sometimes and I have to review schedules and lists and plans over and over and over again and sometimes even then I can't see the sequences or order of how it should all play out.  The amount of variables I used to be able to carry and organize is much smaller.

The second noticeable difference that I feel is from the medicine that I am on.  The medicine dulls areas in my brain in order to prevent seizure activity.  Through research and talking to a friend of mine who is a doctor, I have been able to explain that I don't have the same enthusiasm or mental energy that I used to have.  I'm sure this also comes with being a little older, but I don't feel as though I have the same mental way of looking at things.  Life feels almost muted and it seems logical to me that it is from the medicine.  I can look into other medicines and I might do that.

So, all in all, it was a perfect report.  I am grateful.

Approaching Year 2

How unbelievable that I am just one month away from my two year anniversary of the discovery of my tumor.  I'm also about six months post treatment. I recall vividly in the early days of this journey I found a blog about a man with a brain tumor. He detailed his experiences throughly -- from diagnosis to treatment to fatigue and more.  I read every post he had over and over again, trying to compare exactly where I was on the journey with his reflections.  I wanted to know what would happen next, every step of the way.  While I was still in my early days, his posts became fewer and fewer and I desperately wanted to know his thoughts when he wasn't posting.  And now, as my face to face reminders of brain cancer become less and less, it seems so ironic to me that I don't post very much anymore, either.  Each visit to the doctor would bring up a huge mess of emotions for me, an unwanted opportunity to face my mortality.  Now that I visit the doctor so much less frequently it is easier to tuck away those fears.  I refuse to "pretend" that everything is fully okay, but without the long corridors of the hospital and the continuous needles jabbing my skin, I feel more comfortable exhaling.

Last month I received a letter on a Tuesday saying that my team of doctors had left the University of Washington.  I had an appointment on Friday.  I had no idea why they left or what happened, but it felt like someone had ripped my security blanket out of my crib and thrown it away.  I loved my doctors. They were honest and funny and intelligent and they knew my case and my story.  In the meantime I would be with a temporary doctor until they hired a new team.

I went to my appointment and had another scan.  I was determined that something was wrong and yet the doctor said she absolutely couldn't tell an iota of difference between the scans from 6 months ago to now, which means that my situation is stable with no change (which is what you want).

I was also at a Halloween party last month and as it turns out our school crossing guard was diagnosed with a stage 2 glioma ten years ago. She had it removed and has never had a recurrence.

The distance from December 2014 to now, along with the reassurances from survivors truly help me to feel as though I am healed, maybe just for now, maybe forever, but well enough to shed 99% of the notion that I am "sick."

Over the next few months, I will be working on transitioning this blog back to its original intent -- to share the joys of our family.  I will catalog the specific brain tumor posts and put them to the side in a separate blog that will link to this one.  My hopes are that if someone wants to see the dirty details of the journey, as I did, that those thoughts will be condensed in one place. It will take me a little bit to get it all organized, but I will feel better about sorting it all and releasing the hold that the illness has had on our lives. It will always be a part of our story, but it is no longer the dominant narrative in our story.

In addition, I am working on putting all of my old sermons, prayers and reflections in one place. They are currently on three different computers! Those reflections will slowly be organized on the blog listed to the right -- Thin Veil. As I am invited to preach and teach I will have a place to keep and save things I am currently working on, as well as things I have done in the past. For the sake of disclaimer, I often write sermons as a mix of "stream of consciousness" and research, so there are often run on sentences and grammar errors.

It is good for me to do this because I run into things so often that move me and I would love a place to tuck them away and also to share them.

I know that not many people read this blog anymore, but whether you read or not, I still feel so connected and united to the incredible witness of people that have walked this journey with me.  For that I live in complete gratitude to you!

Routine Scans

I was reminded by some friends that I never really did a closing post.  I think I was caught up in so many mixed emotions that I needed to distance myself from analyzing for a while.

This Tuesday, August 23rd, I have what will become one of many routine MRI's scheduled.  For now, these scans will be bi-monthly as long as there is no growth.  At 6 months out, I can decide to lengthen the time between scans or choose to keep it the same, based on my comfort level.

Since my last visit in June, I have felt great.  That scan was perfect.  My doctor placed me in "maintenance" which means my job is to stay the same.  I have to keep alert for dangerous symptoms, but otherwise live my life as normal.  This has been pretty easy for me and I have been able to get to a point where most days, even weeks, I don't remember all that I have been through.

There was a week earlier this summer in July when my body was very worn down from travel, work and just over-extending myself.  This exhaustion manifests itself in my vision loss and so I had two incidents in one week where my limited vision caused a bruise and a fall.  It felt like someone hit me in the knees because I didn't see it coming.  I feel healthy and strong and when the weaknesses emerge, I remember all that I have been through and how this diagnosis will live with me forever.

When I trip or fall, even on a normal day, my kids, especially Noah are immediately fearful that something tragic has happened.  I have to remind them that I am klutzy and 99% of my trips are just normal behavior for me.

And so, I press on every day, living a life of joy-full moments and living out my normal desire to explore every corner and experience every opportunity possible.

I've had a great blessing of getting to know a new friend in my community with a different type of non-malignant brain tumor who will go through some of the same surgeries I have gone through and who is definitely experiencing the feelings that I go through. These encounters continue to reinforce my deep feeling of connectedness to God's human family.  Unfortunately though, the connectedness is a celebration of human relationships but also connects me to others who have had more difficult struggles than my own.

For Dugan, the young man who was in my youth group at Oxford, the illness took over his body.  His spirit was not lessened, but the large butterfly glioblastoma in his brain was stronger than the medicine and the treatment.  He passed away a few weeks ago and the tears swell up every time I even think about it.  It's a mixture of anger that the disease is so strong, sadness that his life ended so early and a deep, aching pain that his family is suffering through without him.

Again and again I am asked how my life has changed because of all of this.  I say the same thing every time because it is the most true thing I can say.  For the first time in my life, I have had the opportunity to live out what I have always believed.  My thoughts and feelings about death, suffering and pain have been tried.  But, more importantly, my joy and triumph, and my belief in God's presence and power have been strengthened enormously.

And so, I continue to thank you for your prayers and for your support.  Every time I reconnect with a friend, I am greeted with a gentle and welcome inquiry about how I am feeling.  I am grateful for the questions.  It means that you are lifting up my well being and that you are a friend invested in my good outcome.  Hopefully it means that in your prayers you have remembered me.

So, this Tuesday, I ask you to pray that there is no fear in me, that there is no tumor growth, that I walk out of the hospital as cheerful and positive as I walk in.

Sleepy joyful endings

When I met with my oncologist at the last appointment, we debated whether I would skip the last treatment all together.  There isn't evidence that shows 11 versus twelve is better.  I was trying to maneuver the dates with some events in my life and at the end we decided to just keep it where it was.  With this scenario I could be finished by the end of May and just be done for the summer.  I decided to keep the treatment during the same week we had visitors and in the middle of a lot of activities on my calendar.  I wouldn't have it any other way.  As in the past, the first few days are okay and then the symptoms increase greatly.  This last round somehow managed to magnify itself!  Perhaps my body was having some trouble saying goodbye to it's bedfellow Temodar.  I needed multiple naps on days 3 and 4.  By day 5 I was more nauseous than ever and I slept all of day 5, 6, and 7.  Of course, God's timing is perfect and I was home alone with the kids on those tough days.  They were thrilled to have a TV marathon and I was happy to be snuggled in bed with them while I rested.  No lunches to pack, no activities to drive to. I tripled up on my nausea meds, stayed in my pajamas and decided to ride out the storm.  

I barely got out of bed this morning, but worship today was so meaningful that I am so grateful I pushed through the cloud.  A beloved, healthy father in our congregation passed away suddenly last week at age 49 due to heart failure.  The entire church has been reeling with anguish and today we had a collective time to stand in disbelief and join our hearts in prayer.  It was a beautiful time to feel pain together at a great loss, a time to unite in promises to a mother and her children, a time to lean on each other and remember again that each and every moment is a gift, not to be wasted.  

It is in community that I feel most strongly that the ups and downs of life are manageable.  

We sang together the words of Zephaniah 3:17

The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with   gladness; he will quiet you by his love; he will exult over you with loud singing.

In God's community I feel quieted.  I feel that my personal longings and desires and baggage and junk are less prominent and often less important than I make them out to be.  In community I am reminded that I am not on this journey alone, even if I sometimes pretend or even boast that I am.  

By God's community I don't necessarily mean the church, though I feel incredibly blessed to have an amazing church community.  I mean the people that God has put in my life that I believe God is clearly working through.   

As I toasted with old friends on the last night of medicine and shared in our many years of friendship, a neighbor quietly knocked on the door with a large and gorgeous vase of flowers because she remembered what day it was.  My exhausted misery was mixed with old friends, great food, new friends, pain and beauty.  

It's all mixed up together.  It's ugly and beautiful.  Sometimes, too often, I only want the beautiful and I completely forsake the tough times.  

Today as the fog lifted and I felt my body rise again I was able, for one brief and fleeting moment, to hold all of the complexities together with gratitude.  

Round 12

Tonight I begin my last round of chemotherapy.  I took my first dose of Temozolomide on March 16, 2015. I can't wrap my mind around all of the emotions this brings up for me.  14 months of pills and appointments and nausea and exhaustion.  So many nights of staring at these pills trying to find some way to avoid taking them, but at the same time knowing that if I don't take them, I might be filled with regret.  Rearranging my eating schedule, explaining to my kids why I can't play with them or why I need another nap.  Regretfully declining field trips and birthday parties to avoid germs.  Making up stories about good guys and bad guys fighting in my brain.  Most of all, pushing through my body's desire to collapse into my bed because I needed to be a mother and a wife and because I wanted to feel alive more than I wanted to let the medicine and the treatment take over my life.   I keep the doctor's words that those who  "keep life as normal as possible fare better than those who live as a sick person" lodged in the front of my thoughts.  And right behind that mantra I hold the words of my departed friend Becky telling me that to keep it normal puts an awful amount of pressure on a patient to work doubly hard and that if somehow you can't manage to keep things normal you are hurting yourself.

But more than anything tonight I feel such a great hesitation to rejoice.  The hesitation has nothing to do with my lack of joy to be at the end of this part of my journey.  It has more to do with my greatly increased knowledge of the interconnected-ness of life. I don't feel the freedom of taking the last pills because I know that there are people all over the world staring at their treatments wishing they could be anywhere else.  Tonight I share in their duplicitous feelings.  The promises that these treatments will help, when in reality, no one really knows the complexity of these diseases and what will ultimately cure them.

I will never again claim to understand what someone struggling with illness feels like.  I will never say "I know how you feel," because I don't. Even if two people have the same diagnosis and treatment, their life circumstances, their bodily response, and their emotional state will vary tremendously.  We can never know how another person really feels and it is best to be supportive, nurturing and loving, while leaving the cheap quips out of the discussion.


I feel so much more able to identify with a deep ache of diagnosis, of the unknown, and of dangerous wandering thoughts.

But more than all of this, I feel connected to a wider range of emotions.  I feel pain more deeply, fatigue more fully (even more than with a newborn!), fear with more tears, sadness with a wider lens, joy with a brighter spirit, humility with my pride taken down quite a few notches, community with a new sense of importance,  and hope, perhaps not a hope without some fear still tethered to it, but the hope that each new day brings.   The Lord's prayer says "Give us this day our daily bread."  I've heard it said many times that we receive bread enough only for today.  Not enough to store aside for tomorrow, not leftovers to horde from yesterday, but just enough for today.  When we try to live on more or less than our provision, we are left longing.  So, when I speak of hope, I have enough hope for today and enough thanksgiving to see what is right in front of me.

I suppose this is some sort of launching pad.  I've seen many people have a last day of chemo celebration, but for some reason I don't feel connected to that because I know so many chemo treatments are so much harder than mine.  There is no great port removal or end to infusion centers.  For me it is just the joy of throwing away the last bottle marked "danger" that litters my bedside table.

I'll move into a new part of my journey.  My appointments will be less frequent.  I'll be monitored less closely.  I'll try to live a life less defined by this diagnosis.  Each and every day will be a day farther away from this part of my life which has both positives and negatives.  I will likely begin to slowly slip into the normalcy of taking life for granted.  The medicine and the doctors keep the frailty of life forefront.  It will be a challenge to remember the joy I felt making my children hot dogs a few weeks post surgery, but perhaps I can find a way to rejoice in the fact that I don't need to notice routine things as special, but be grateful for routine itself.

So, tonight as I begin my last round I welcome the beginning of a new end and I pray for the millions of people, some of whom I am blessed to know, who are still trying to maneuver the unsteady path of treatment.

New growth, the good kind

In the past few months, things have continued to feel very normal.  The last two rounds were rougher than I expected because the in-between time has been so great.  However, rough has a new meaning.  It means that I feel the fatigue and I need to rest.  At this point in my journey I am able to recognize the signs, know what my body needs and respond appropriately.  Being aware of the warning signs helps me to feel so much more in control.  Probably the hardest part of the chemo weeks is my lack of desire to be healthy.  I only feel a desire to eat comfort food and I have no energy to prepare anything.  I don't have the ability to exercise, which is what has been giving me the feeling of strength.  It is still hard to remember in those weeks that I will eventually get back to my active self.

My last two MRI scans have come back clear, which is always a reason to rejoice.

Though I have made my proclamation that I'm not sick (which still holds true based on how I feel and act and live), the facts still linger about the 100% recurrence rate.  So, my mind still occasionally reverts back to the thought of when I'll be back in the place that I was last year and the thought of a second craniotomy.

I still continue to be incredibly blessed by the community that God has provided for me.  My Bible study surrounds me with so much love and encouragement, in addition to the weekly gift of purple carrots.  My neighbors regularly ask about how I feel and what I need but they don't focus on it and they don't intrude.

I also keep in the forefront of my mind that my role is to live into my beliefs.  To say things your whole life and claim that you believe is different than living through difficulty and truly living in a way that reflects that the promises are true and real.  Even if my doctors will never say that I am "healed," I really feel so strongly that I have been made well.  The gifts of the Holy Spirit are more present and real than I ever imagined.

So, I will return to my oncologist on May 20th and begin my last round of chemo that week (to even utter those words gives me chills).  I am so looking forward to a healthy and happy and strong summer of sunshine and friends and family.

And so, yes, the new growth is certainly in my soul, but also in my appearance!!!  I feel so blessed to have tons of new hair growing in some of the bald spots (not all), but the new hair is CURLY, SO CURLY!  Everyone told me it would grow back differently, but it is impossible to control the side hairs by my right ear and the hair in the back.  Paul helps me try to flat iron it and I use a lot of gels and sprays to help it to not stick out like springs, but I have no reason to complain.  It is just a reminder to me that my life looks different now than it used to.  The hair is a symbol of gratitude.

A few months ago, my friend Kelsey was struggling through some things with school and lamenting that life is hard.  I said to her, "life doesn't get easier, it gets harder, but in the midst of the difficulty, you also get stronger." I imagine my 20 year old self full of insecurity that my hair didn't look good and now I see my crazy curly hair as a sign of redemption and hope.  I will continue to lean in to my faith and to live out what I believe.  I hope you do too.