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.

Post 10 months

I made it through month 10 fairly easily. It was during Holy Week and by Easter I was toast, but I slept for two days afterward. 

I declared to my Bible Study last week that I am no longer sick. I feel so good. I'm exercising more than ever. I have strength and energy and enthusiasm. I have no signs of being sick. I feel that since they removed 100% of my rumor that there is no reason to focus on it anymore. I still have two more months of chemo but they will be at the lower dose and then I will officially say goodbye to the past year and a half.  

I feel that at this point that the majority of my deficits have cleared. I only very occasionally bump into things on my left. I began driving on the highway again occasionally.  I don't feel dizzy or nearly as much confusion. I have not needed to lie down in the afternoon any longer. 

These deficits are results of surgery, the tumor and the treatment. They will always be a part of my life, but the stronger I feel, the more my body can compensate and the less present they are. 

The statistics and data and prognosis will always linger in my thoughts but I believe they will increasingly be more remote thoughts. Treatment is the real thing that keeps it all forefront in my mind and when that is over and I regain all of my energy I am sure I will only look forward. 

So, if you were to look at my life and spend time with me, you would agree that I am not sick. 

If or when the tumor returns, I'm sure I'll revisit some of the fears of this journey but for now I will live a life of freedom and joy!!

Great news!

I had a regular appointment today. My bloodwork came back perfect. All of my numbers are back up! Praise God!

The doctor is going to keep my dose at 300mg instead of 400 mg because my body has not handled the higher dose well. I'll start the next round next Wednesday. 

This will be round 10. If all goes well I'll be done in May. 

I asked when I would be considered in maintenance. The doctor said he would consider me in maintenance now. I'll finish these next three rounds and then I will have routine MRIs. They will never say I'm in remission and they will keep a close eye on me but likely it will be a while until the tumor comes back. 

In the meantime, I'll keep drinking my green juice!

Recovery

Last month in my struggles, several friends reccomended different natural strategies. I have no problems with that at all. One friend gave me some kimchi which I loved. She made it in this amazing salad. 

 Another friend shared the healing properties if purple carrots and gave me a bag--I loved them!

I started thinking about all of this and remembered that I used to drink a green powder before and I pulled it back out of the cabinet. I usually drink a smoothie in the morning so I just started adding it in. Within days I felt so much better!!! Since then I have had so much energy and I feel so good. The drink is Trader Joe's Super Green Powder. It could be the extended break between rounds as well, but I know the extra vitamins and antioxidants don't hurt. 

I haven't had any bloodwork or appointments but I go in for a routine visit and bloodwork next Wednesday. 

I continue to be amazed by the people God is surrounding me with. My bible study is a strong force of prayer and accountability. They check in with me and are really invested in my well being. My neighbors continue to be amazing by helping and just being good friends. When I look around I just feel blessed and so encouraged!

Glaciers and mountains and lamb, oh my!

After my dramatic week in the ER I was a little worried about my energy level going to Iceland. The jet lag was horrible going East. It is an 8 hour difference and we lost a night of sleep. We were all in a fog the first two days.

We were so blessed to be able to stay in a relative's home in Iceland who by chance was on vacation in the US. We had plenty of space and a great amount of comfort. I think having this haven was a real boost to me to be able to rest quietly. 

On our first night we happily had dinner with Len and Sandra and enjoyed our time catching up. 

The second day we headed to our glacier tour, Into the Glacier. We brought all of our snow gear from home and we were all bundled up. We climbed into a giant "super jeep" and began to drive straight up a mountain. 

We learned later that the vehicles were decommissioned NATO missle launchers! The jeeps had a gps  that kept them on track even when you couldn't see a single thing. One of the jeeps turned on its side and then was able to right itself and keep going!

We got to the top and exited the jeep.  There was a large tunnel into the ground. We made our way through the storm to the entrance. 

We walked down into the glacier(landeskojull).  Once inside, we were literally surrounded by ice on all sides. We walked through all of the underground paths and tunnelsadter we put on crampons. We were able to hear the difference between noise echoes in different depths. 

There was a small chapel with pews. 

There was a large crevasse that went the entire way along the cave filled with great ice formations.

Day 3 we went on a fantastic horseback riding trip on Iceland horses.  This was my favorite part of the week.  We were riding through snow covered mountains, through streams and its was so beautiful!!!

Day 4 we went swimming with Len at one of the amazing geothermal pools and relaxed.  It was wonderful because the ground was covered in snow and we were in the pool!

Day 5 we took the kids into Reykjavik to look around.  We gave them the famous hot dogs and went to the cathedral Hallgrimskirka where Len helps with the English worship services.

Day 6 we made the drive out to the geyser and to the large waterfall, Gullfoss.  We've been to them many times before but the kids are old enough to remember now so we wanted them to see it all again.

We enjoyed every night having dinner with Len and Sandra.  We played games and laughed and enjoyed many wonderful meals, mostly fish.  On the last night we were treated to Icelandic lamb which is so good!!!

We were all sad to go and the kids were teary eyed.  I know, however that that is a sign of a good trip and a loving family!

Let your frustration be your joy

After my poor blood work results last week, I was instructed to go back again on Monday of this week.  I went back and there was no change in my numbers.  I was feeling pretty bad, but I attributed it all to the counts being so low.  I progressively felt worse and worse.  Beginning Monday morning a strong headache started in my neck and pulsed throughout my head for the day.  I took Tylenol on and off and slept most of the day.  I slept from about 2:30 on Monday through Tuesday morning.  I did some things Tuesday and came home and went back to bed.  I couldn't shake the headache and at this point I couldn't get out of bed.  I called my nurse to let he know what was up but that I wasn't concerned because my MRI last week was completely clear and I was guessing it was a result of the low counts.  She didn't agree.  After a quick call to my neuro-oncologist I was sent to the ER for a head CT and a host of tests to see if there was a brain bleed or intercranial pressure.  

On the way to the hospital I couldn't sit up and I couldn't focus.  They got me checked in and I couldn't stand the light or stay awake.  I covered my head with a blanket and slept.  Of course, it took a while for everything to happen.  I had 3-4neurological exams, 6 vials of blood drawn, an IV and a shot of morphine.  I was finally taken back for the head CT which turned out to be fine.  Another neurologist came in and did an exam and recommended a lumbar puncture. I was not in favor of this idea!!!!!  

They explained to me that with my blood counts low there could be an infection that no one can see in my spinal fluid.  By drawing some fluid out they could test it to see what might be going on.  I really didn't want this test but I said I would do what they wanted.  This neuro doc called my neuro doc and they discussed things for a while.  

If I had a bacterial infection, I would have had more symptoms.  There was no brain bleed on my scan. If I had too much intercranial pressure than my head would feel like it was exploding, which it wasn't and medicine wouldn't help, which it did.  Meningitis would have also shown up on my scan.  

So after a few hours of close watch with nothing conclusive, my neuro  recommended that I stay over night for monitoring.  I was surprised by this because they didn't find anything.  I asked what they would do differently in the hospital that I wouldn't do at home.  At either place I was going to sleep.  They talked about it and allowed me to go home with a promise that if I had any lethargy or severe headaches I would go right back and get admitted immediately.  They gave me some prescriptions for pain and I finally left late last night.  

Between last week and this week I had 5 or 6 blood draws and IV's.  When the nurse went to put in my IV she looked at my veins and said "look, here's Old Faithful!  We'll use this one since it's already proven to work". I laid there and looked at my arm lamenting all of these needles and wishing it wasn't like this.  I was tired of being pricked and poked.  I don't want to have an "old faithful" vein.  

I remembered a book I read that I was given for Christmas.  It was called Between the Darkness and the Light.  It was an incredibly powerful and must read book.  But what I remembered last night was the chapter about frustration.  The author said that we think we are frustrated by all of these things in life, but often, when we look closely our frustrations often turn out to be our greatest joy.  If we are frustrated at kids or jobs or house circumstances, if we take a look again the things we say drive us nuts, they are really sources of joy.  

So as I pouted over Old Faithful I was reminded that my veins haven't collapsed, that they are strong enough to withstand the pokes, that I have amazing and competent doctors and nurses who cause no pain with needles and that I was alert and aware and alive and my blood and veins are proof of that.  

Of course, when they tell you that your brain might be bleeding your thoughts race quickly.  I wanted to be with my children, in my bed and surrounded by whining and piles of laundry and cat hair... Surrounded by the things that generally cause me frustration.  

I was finally discharged last night and I came home and went right to sleep.  I woke up this morning still feeling the headaches but after an hour or so my head cleared and I feel really good.  

I talked to my nurse again this morning and she said I sounded much better.  There could be a viral infection, but even if they found it, they don't treat viral infections. 

So, now I will have another week or so with no more chemo an time to relax.  

I'll speak tonight at church about 2 Corinthians 5 and how "now" is the time.  Waiting for a different time to reconcile, to change, to start over is not the way to go.  There is no point in waiting when there is "now."  I'm grateful for lent because I love the seasons of the church and I love remembering that it is God's breath alone that gives me life...that without it I am a pile of ashes.  

Ashes or no ashes, I pray that this is a day of reconciliation for you!!!

Highs and lows

I had my check up today. 

The great news is that my scans continue to be completely clear. This is ultimately the most important information. 

In other news my blood counts continue to plummet. 

As I said before, a healthy adult has a platelet count of 150-450. Today I measured at 60. This is the lowest count I have had yet. 

Low platelets cause bruising and bleeding. I am to go to the ER if I get a nose bleed or if I get a cut that doesn't stop bleeding. 

My white blood cell count is 2.5 and a healthy count is 4.5 to 10. This number is my ability to fight infection. 

My blood pressure came in at a whopping 88/50. 

I go back for bloodwork again Monday. If my numbers go down again significantly, the next step is to talk about a blood transfusion. 

So, in response to this news, I will not start my next round until we return from our trip to Iceland on February 21. In addition, he decreased my dosage for the next round to 300 mg. 

These numbers explain why I am so tired and why I am unable to get through the day or walk up the steps. The doctor said that my body and bone marrow are responding to the increased and prolonged exposure to toxicity. 

The news is not unexpected. And in some ways it is a huge relief. I left the office smiling because now I will be able to enjoy the holiday and the trip a little bit more. 

 I'm hoping and praying Monday goes well and my body bounces back soon. 

Time for a nap. 

Job

This past Sunday, I was given the great privilege to offer a reflection on Job 38 for our church. It was my first sermon in 18 months. After helping out at church here and there for a while the session voted last month to add me to staff in a very part time agreement. We are working to make a position of Parish Associate but that will take time with church policies, etc. 

Everything went really well and I felt God's presence with me the entire time. 

More than anything I was just so grateful to be able and well enough to lead worship!!! I know so many brain tumor patients who have lost speech or mental clarity. I have struggled with the thought that I might never be able to get back to work because I spend so much time at the doctor or in bed. This opportunity fits perfectly with my time and energy level. It is a huge blessing to me and I just pray I can be a blessing to them!!

Round 7, check

Round 7 was another trip through the ringer. My nausea was worse, as expected. I only took the second medicine once because it made me fall asleep and I didn't want that. So, I took my Zofran, a little more than I was supposed to, but I needed it. I also found that gum and ginger mints helped so much. 

It was a weird round in that I didn't sleep as much and the severe part of it didn't last as long, but I felt as though It seemed to drag out a very long time. I didn't recover until a few days ago (2 weeks post meds). I was so drained and sluggish. I couldn't climb steps without taking a break and my appetite was gone. 

I went to bed really early a few nights ago and Paul asked why. I told him I still wasn't back to myself. As we layed (lie?) together we were chatting and I asked why I had my appointment next week already, so close to the last one. But when we did the math, it has been a full cycle. I was shocked and surprised because I didn't get that recovery time. I started to panic because Valentine's Day is coming and I don't want to mess up the fun for my kids. In addition we are traveling to Iceland soon and I realized all that I will have to do to prepare, in the middle of a treatment cycle. Paul comforted me as usual and promised to take care of everything. I just have to be okay with it not being perfect, which as you know is a great struggle. I continuously set myself up for disappointment. I guess I have to learn to be okay with that too!!!

And so here I am, a few days away from another MRI and another dreaded torture week. And yet, I'm alive and relatively well and I'm grateful for the opportunity of each day. So I'll enjoy 4 days of feeling great!! I covet your prayers on February 4th!

Glioma Research

Here is a new and somewhat promising article about glioma studies. It's pretty technical, but gets more clear as you read. 

http://mobile.nytimes.com/2015/12/24/health/brain-cancers-reveal-novel-genetic-disruption-in-dna.html?referer=&_r=0

In her first performance...

The kids school offered an after school piano/keyboard class last quarter and Maeve was very excited to sign up.  She took to the instrument quickly and would even practice regularly on a paper of a printed keyboard at home.  After 8 weeks her class had a recital.  She was very shy at first, but finally went up to play her song.  We are all so proud of her!!

7.1

Harder and harder it gets.  But I guess, in some ways easier.  

I started round 7 on Wednesday.  On Thursday I headed to the drug store to pick up some prescriptions.  I got confused and then really frustrated when the orders couldn't be filled yet.  I felt myself start to mentally collapse because I had walked to the drug store and I would have to come back again the next day.  As swiftly as I started to panic, I remembered that I'm taking chemotherapy drugs!!!  How funny is it that it was a relief!  I was able to check my feelings and balance them with a  little grace.  

Yesterday I made it until noon and then slept all day.  Walking up the steps was hard and took my breath away.  Today I couldn't stand.  A shower was exhausting and it felt as though a heavily weighted  X-ray blanket was pulling me down.  So, I am back in bed.  It's actually quite nice.  The kids and Paul are skiing and I can't do much so I actually sat and read, which I never do.  The nausea is still hanging on, but I'm coping.  I guess this is what people do when they relax? Sit in quiet, read, and nap.  Why haven't I tried this before?  

My next MRI will be February 4th.  

I'm continuing to pray for Dugan, Pete and Bill... my brain cancer buddies.  Please add them to your prayer list!

Do you miss it?

It seems lately that I've been surrounded by people with babies.  At church, with friends, in passing... I ooh and ahh over the little ones and admire their sweet sleep and smile at their cries.  And almost every single time, the parents ask me if I miss it.  If I miss having babies around and their sweet and cute baby life.  I almost always say no.  I don't miss being sleepless, getting up so early, the constant moving and chasing, the unexplainable tantrums, traveling with strollers, pack and plays, diapers, extra clothes.  I was a very worried and frantic mother of babies.

But now my life is so very different.  Yes, we are busy with endless sports practices and difficult homework, but I feel like we are in a sweet spot.

On the airplane home from Pennsylvania at Christmas, a couple was behind us with a 2 month old girl.  The kids and I smiled and cooed at her the whole time.  At the end of the flight one parent said to me... I can't wait for her to be as old as your kids!  They sat so still and calm on the plane.  It made me laugh and remember an overnight flight to Iceland when Noah literally screamed from 2AM to 6AM and every flight attendant on the plane was trying to help.

We saw the couple again outside of baggage claim, lugging the baby and all the gear.  Noah and Maeve were pulling two suitcases each and again, the parents said, "See!!  I can't wait for that!"

This week I was putting away all of the Christmas presents and I looked through some sketch books in Maeve's room.  Over and over she wrote Paul and I letters about how much she loves us.  She kept writing, I just love you so much.  You'll never know how much I love you, over and over again.  She put notes in my pockets this week telling me to have a great day and she snuck a note under Noah's pillow to tell him he's a great brother.

Noah is my right hand man.  He gives me everything purple he finds because he knows its my favorite color. He cheerfully helps with whatever I need, partially I think because he's worried about me.  He tells me all about the struggles of 4th grade in depth every night.  He asks for my advice on what matches and what I think will look cool.  He asks for story after story about how he was as a baby and about my childhood.

I listened to a TED talk earlier this year that said that children who are part of a bigger story will ultimately have more self confidence in the long run than those that aren't.  The talk shared that religious stories, stories of origin, family stories and more help children feel connected to a world that is bigger than them and encourages them to dream of how their role in the story might shape the next chapters.

This past year was without a doubt the most challenging year of parenthood so far.  With our move from PA still lingering, through our moves from corporate housing to a rental house to a more permanent home, coupled with my sickness and treatment,  somehow we were disappointed when our children didn't act perfectly through it all.

After many months of soul searching and prayer and pain it feels as though we have emerged on the other side of that storm.

Maeve is wearing socks and shoes, getting dressed without a fight.  Noah is calmly thinking through his thoughts and actions.  We are more patient and more understanding.

I am so incredibly grateful for this moment we are in.  I'll take all of the notes and cuddles and hugs and feeling as though I am the best mom ever.  I love hearing what they have to say.  I love dreaming with them.  I love hearing about their friendships and their struggles.  I love telling them that I will always love them, no matter what. That I will always forgive them and that more importantly, God will always forgive them.

I know there will be other storms on the horizon.  The teen years are right around the corner with all new paths to cross, but I love where we are and I might even say I love where we've been, and more than all of this, I love where we are going.

Christmas Inspiration

When I was in PA for Christmas, I wasn't sure where to go on Christmas Eve.  We were staying in Reading and First Pres was over an hour's drive.  I wanted something mid day and family oriented for the kids.  I looked around and the only thing I could find was a family service at Glad Tidings Assembly of God in Wyomissing.  I knew the church and had attended there for an evening young adult event many years ago.

I prepared the kids that this would be different than any church they had been to.   I told them it would be "modern."  We walked in to the church and we were greeted so enthusiastically.  The church seats at least 500, maybe 1000.  It was packed to the gills and they were doing 4 other services that day!  There were movie screens everywhere, spotlights, video cameras and more.  The kids eyes were big as they looked around.

The church played traditional Christmas carols that we were used to and had a wonderful rendition of O holy night.

The part that spoke to me so powerfully was when the pastor came out.  I had no previous knowledge of this church or this pastor. But when he walked out on stage, the entire congregation stood and cheered  and cried as if it was Elvis himself walking back from the dead.  We were a little confused and clearly had no idea why everyone was cheering.

As he began to speak he shared that this was the first time he had walked in almost a year.  In 2015 he was in a terrible motorcycle accident that killed his wife and left him without a leg.  After almost a full year of therapy and hard work they finally finished the work of a prosthetic and his Christmas wish was to walk for Christmas.  He had previously been preaching from a wheel chair and that day he was on crutches.  He stood through the whole sermon, leaning against a pulpit and I'm sure he was completely spent by the end of the day.

At this point, I was still skeptical of the whole experience.

When he started to preach, he shared a little more of his year and how hard it was for his sons and he on Thanksgiving Day to sit there without their mother.  He shared about how much he loved his wife and that she was his best friend and his perfect partner.  He shared that he used to be a major league baseball player and years ago had a serious eye injury (I think he lost an eye), so he was no stranger to trauma.

As he continued on, he shared more experiences in rehab with what he called his "stump." Apparently it isn't a correct term to use anymore, but in rehab he was surrounded by veterans who all called it a stump and so he went along with them.  He saw his time in rehab to be a time of evangelism and a time to share his faith in God's goodness.  Of course, it is hard to imagine so much joy in the midst of so much sorrow, but he was full of joy.

He began to read scripture and he read an Isaiah passage.  Isaiah is almost always quoted on Christmas Eve and is understood by many to be a foreshadowing of the coming of Christ.

His text was Isaiah 11:1

A shoot will come up out of the stump of Jesse, from his roots a branch will bear fruit.  

It took my breath away.

He joked about the common claims that the Christmas tree has no place in a religious Christmas and then he showed a tree farm where a tree had been cut down and only a stump remained.  He said in jest, "Who says the Christmas tree has no connection to the Bible?"

His message continued on to share that it isn't what has been cut off that matters as much as the new life that grows out of what has been cut off.

In Matthew 1, the genealogy of Jesus is laid out and Jesse, thought to be the father of King David, is named as part of the lineage leading to Jesus.  It's considered Jesus' family tree.

The pastor continued on that out of a stump, a new branch will grow and out of the stump of Jesse, a lineage leading to Jesus had grown.

He talked a lot about things that had been cut off in his life and things that are cut off in our lives.  Relationships, health issues, jobs, marriages and more.  And how it is what comes out of what is cut off that propels us forward.

It was a tough message for sure, but very meaningful for me.

Though I didn't lose people or limbs this year, I lost a part of my brain.  I lost some of my vision. I lost half of a head of hair.  I lost some of my driving abilities.  I lost a year of energetic activities with my children.  I am still dealing every day with loss.  Of course, most of all, on the forefront of my mind,  is the immanent loss of years off of my life.  Without a doubt I am aware that there are no guarantees for anyone and I am ever so grateful for my incredible outcome, but the current and especially future losses are what plague me most.

I said when this first happened, a few days out of surgery, that I am absolutely sure that God will and has used this for his glory.  If what I have been through gives one person hope or a glimpse of faith, than it is worth it.

All of those things still hold true.

I am confidant that out of these losses, beautiful new branches have and will continue to grow.

And so, on a side note, when you have the opportunity to give to cancer research, to support it in the check out line or sponsor someone for Relay for Life or a cancer run, please do.  The only way for the branch of a cure to happen is for research funds to fuel the scientists.

That would be a branch of God's goodness that would allow millions of family trees to keep growing.

And so as the service continued, an invitation to accept salvation was given and plenty of people raised their hands to know more.  I smiled, knowing this wasn't my tradition and never would be, but I was sure that that place was filled with the Holy Spirit and doing great things.

We sang Silent Night and raised our candles and proclaimed that though there is darkness that the darkness will never win because the darkness can not overcome the light.  This is the Christmas message of John 1 and the message of Christ breaking forth into the world.

I hope your Christmas was full of joy and new beginnings!

Rehab, Part 2

When I returned home from Christmas break I was amazed at how smoothly things had gone.  I felt great.  I didn't feel as though I had any significant episodes during the travel.  I had even forgotten about the rough patches before I went home and I was enjoying my days.

At my next appointment with the rehab doctor I told her how great things had been going and how I hadn't really had any forgetful moments (that I remember, ha ha). As we talked and looked through things I realized that the streak of unfortunate events happened in the 10 or so days of treatment/post treatment.

This was a huge relief to me!!!  It made complete sense.  As the chemo continues to build up in my system it gets harder and harder to function during the treatment.  It is a natural conclusion that my brain would slow down during this time and struggle to do ordinary things.

I feel more prepared to go into a another round with lower exceptions!

Beginning Round 7

Today I had my routine check up.  I have felt so good over the last few weeks.  I've been full of energy and enthusiasm.  I felt like my energy didn't even really tank over Christmas, either, and I am grateful for that.

At my appointment, however, my doctor shared that my blood counts are not good again.  I can't remember all of the numbers.  My platelets are down, my white blood cells are at 2 and should be above 4 to start treatment (a normal person's range is 4-11).  His first reaction was to tell me to wait to begin my Temodar.  He then asked me to wait for another test to analyze the kinds of white cells that are struggling.  He was specifically looking for my neutrophil counts, which are the white blood cells that come from the bone marrow and have the ability to fight off bacterial infections.  He sent me home and told me that a nurse would call me later with instructions.

I was assuming that I wouldn't start tonight, but around 8pm, my nurse called to tell me that even though my counts are low that my neutrophils are doing okay and that I should begin this round of chemo.

In a strange way, I was disappointed.  I should be happy that my counts are good enough to continue treatment, but I thought I could put it off for a few more days.

The last round caused so much nausea that I sat next to a bucket for hours each day.  I was taking the maximum dose of Zofran and I couldn't take any more than I was.  The doctor called in a second prescription for another nausea medicine to take in addition to the Zoran. The second medicine should combat the nausea, but will cause drowsiness and may inhibit my ability to drive.  I have these medicines on hand now and so I should be able to do a little better this time.

Needless to say, I'm not looking forward to it.  (which is sort of amusing, because no one would look forward to it!)

But again, it is just a few days and then I'll bounce back again.

5 more months.

Rehab, part 1

In late November, my doctor suggested that I should begin seeing a rehab specialist for brain cancer patients.  I dismissed her suggestion, reminding her that I am totally fine and functioning normally.

A few days later a scheduling office called to set up an appointment.  It's amazing how my doctors and nurses hunt me down.  They call to remind me to get blood work.  They call to remind me for prescription refills.  They call to set up all of my appointments.  I guess that with my diagnosis they can't rely on forgetful, recovering people to remember all of these things.

When this scheduling office called I didn't even understand who it was because I was determined not to go to this doctor!

But, at my first appointment, I started to realize why I was there.

Through all of this I have been trying my best to keep it together and to get through the days as normal as possible.  I push myself very hard to keep up with tasks and to take care of my family.

After a few questions and some routine exams, the doctor started pointing out some things that have not been going so well.

I know that everyone is forgetful and everyone loses their keys.  One particular week I lost my keys and wallet multiple times a day and Paul searched and searched the house with me, trying to help me through my frustration.  He patiently looked with me every time, never getting annoyed or exasperated.  He could see how much sadness it brought me to feel like I couldn't make it through simple tasks.

When I flew home from Thanksgiving, I realized the night before my flight that I had misplaced my license.  I thought I wouldn't be able to get home.  If I waited another day, Paul could send my passport in a same day air transaction.  He sent copies of my passport.  We looked online to see what to do.

When I arrived at the airport, Delta refused my luggage because they could not have bags for an unidentified person on the plane.  Kelsey had to swing back around after dropping me off to get my bags and take them to her house.  In the airport I had to go through a special TSA screening full of drug and bomb powder testing, many identification tests, thorough investigation of my check book, credit cards, etc.  After all of this, and two scared kids in tow, they let me get on the plane (Thank God!)  I was praising God for this undeserved grace the whole time.

When we got home I had to go and buy all new underwear and pants for the kids because I had packed them in our luggage.

That same week I left my flat iron on for two days, I left a burner on for an entire afternoon and I took a nap after Paul had pre-heated the oven (as I asked him to do).

I was feeling overwhelmed by all of this, as if each day something else was slipping out of my control.  I also started to notice a slight inability to recall words and events which was also scary to me.

The last straw was that at my kettle bell class I couldn't follow the directions for the work out.  The trainer kept explaining it, but I just couldn't hear her and comprehend the sequence of the moves.

I started to tear up in the class and I wanted to leave.  All I could think about was how disappointed I was in myself.

So, after discussing all of this with the doctor, I started to realize that there was a pattern that I hadn't previously seen.  I kept telling her that I was just trying to get back to my old self.

She explained that my brain simply can't do what it used to do.  Though I was not in a car accident, my brain is responding as if it had severe head trauma.  A brain cannot distinguish between a tumor/craniotomy and other head trauma.

She carefully and kindly explained to me that I need to stop focusing on my old self and let it go because I likely will never get back there.  That was a hard blow to hear.  She worked with me to find some new ways to begin to live in to my new self.

She asked me to consider regular help with the kids, even if it means taking them for a few hours so I can have extra time to finish things I need to do.  She also encouraged me to use a meal service occasionally and to consider hiring a house keeper.  I was pretty adamant that I didn't need these things.  I don't work and so I should be able to take care of these things.

She shared stories of other brain tumor patients and their struggles.  For most people, it used to be easy to run multiple errands and fit in social events, free time and more.  For head trauma patients, the brain slows down significantly and can't withstand a long day of errands.

The reason I have generally felt so good is because my brain is working extra hard to compensate.  She shared that I don't have the capacity to do as much as I think I can and so my brain shuts down when things are complicated or confusing.

We worked on tangible solutions to help me to make it through routine days.  Paul ordered me a tracker for my wallet, keys, phone and purse that allows me to know where they are at all times.

When I travelled for Christmas, I had Noah ask me every ten minutes in the airport to check for my wallet and phone.

Another dimension of this is that because I am so high functioning, no one (except Paul) can really see my struggle.  If I mention my forgetfulness, often people downplay my experience and compare it to their own forgetfulness.  I totally understand this type of empathy, but the confusion that I experience is quite different than an average lost wallet.  In addition, it is emotionally hard for me because I know what is going on inside my head and I am constantly reminded of my limitations.

Having said all of this, my energy and joy is true and real and not diminished.  I am not "faking it" when I appear normal.  I really do feel great.  But the patterns and the consistency of my limitations will continually need to be addressed and I need to focus on new ways of coping with all dimensions of my outcome.

I know in theory that none of my friends and family are disappointed in me.  But in reality when I don't return letters or keep up with emails or remember the details, I feel a sense of loss and I can't help but think that in the routine of daily life, others notice my lack of response.

Perhaps mostly my children.  When they want to play a game in the evening or want me to do one more thing, there simply isn't anything left in my exhausted state and their sweet, loving faces beg for more of me.

And so my doctor and I are working on carving out that space as well.

These weeks have been both eye opening and a great struggle for me.

And so I ask for your prayers as I work on moving forward instead of looking back.