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.