Mutant

I’ve got two treatments under my belt.  I was afraid I’d forgotten how to do it, but its just like riding a bicycle,  if indeed riding a bicycle makes you nauseous, fatigued and mean as a rattlesnake while you are hyped up on steroids!

The first treatment was a bit weird.  I didn’t really know any of the people in the chemo room.  Lots has changed in the last year since I’d been there regularly.  For someone who might or might not have been voted “chemo queen” that was a bit hard to take.

But the second treatment brought wonderful conversations with two other patients.  Including a woman just diagnosed with Stage IV lung cancer who was very happy to hear that I was doing well over three and a half years later.  I may have to dig out my crown and polish it back up!

Last week we got some really good news.  I was able to get into a clinical trial that sent my tumor tissue away for complete testing.  As some of you know, I’ve had some genetic testing done along the way.  I’ve also come up negative each time.  This time the doctor had positive news!

I am the proud (?) owner of the RET fusion mutation.  Very rare, this mutation only occurs in 1-2% of lung cancer patients, mostly in young (ish) non-smokers with adenocarcinoma.  I could hardly believe the news.  This is so encouraging because this gives us a target.  There are already phase 2 and phase 3 clinical trials where they are testing drugs to see if they are effective against this mutation and they are getting really promising results.  One of the drugs is already approved for thyroid cancer which will make its journey to use in lung cancer even faster.

For now, we will not change anything.  I’ll have one more treatment in a couple of weeks and then a scan to see how I’m doing.  Whatever the outcome of the scan we will then make some plans to follow up on our next steps now that we have this new information.  It gives us many more options and we are so very thankful.

A couple of Fridays ago I was at a yoga class with some friends.  It was a healing class in a pretty small room.  We were doing some gentle poses and moving from one to the next in mostly silence.  I looked around at the faces of my friends and I thought, “I can’t remember ever being happier with my life.”

I know that sounds so crazy, but it is really true.  My kids are good, my marriage is good.  We are happy to be making plans to be with both of our extended families this summer because we really love being together.  My work is satisfying and church is awesome.  Our friends are the best around.  Life is really good.

I wish I could stay in that moment forever.  Because in that moment I realized that my happiness is not dependent on my circumstances and if I wait for my circumstances to make me happy I will miss out on so much.  My goal is to be aware of that every single day.

I wish the same for each of you.

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Again

As in, here we go…..again.

My latest PET scan revealed that I have a small lymph node that was acting suspiciously like cancer.  One bright spot right above my heart.  Deep inside making its home between a whole lot of important vessels and structures.  Unable to be reached by the surgeon’s knife and too big for what’s left of the radiation I could still have to that area, we are left with attacking it with chemotherapy again.  I will start my treatment on Monday.  We will do several rounds and then rescan to see what has happened.  We have consulted all my doctors both locally and at the Cleveland Clinic and they are all optimistic that I will have another good response to treatment.  I am not afraid.  I’ve had a marvelous year off treatment.  I’ve gotten my energy (and all my hair) back and I’m ready to go.  We kicked its butt once, no reason we can’t do it again.

So what to make of this?  Did God forget about me?  Did I not do enough good to warrant further remission?  Did He get my hopes up just to dash them again?  Is this some sort of cosmic punishment or further testing of my faith?

If I am honest, I have spend some time dwelling on all of these possibilities.  I think it’s human nature to do so.  As I’ve talked about many times, I’ve got performance issues.  That plays very nicely into the part of my brain that wants to think that if I’d just done ENOUGH then maybe this wouldn’t have happened.  But what is enough?  I don’t think there is an answer to that because that’s not the point.

What is the point?

Well.  I don’t really know.  But here is what I do know.  I have a friend who wondered aloud to me that if I reported that I had cancer again after one of my scans if people would still leave the comment that “God is good”.  I think that is a valid point.  Do we only think He is good when He answers things the way we think they should be answered?  Or is He good all the time?

So my answer is that He is still good.  But that does not mean that we are not disappointed or bewildered or angry or sad or whatever emotion news such as this brings to the surface.  I don’t pretend to understand God or his ways.  He is a mystery.

I am choosing to look at it like this.  I was given the wonderful gift of a year without treatment.  I was able to be fully present in my life without working our schedules around chemo treatments and things that surround them.  I got my energy back.  I lost the puffiness around my eyes.  I saw my kids grow up in ways that astounded me.  I went shopping with Katie for a dress for her first dance.  I saw Elena face her fears and try out for the sixth grade musical and be someone’s Valentine for the first time.  I could go on and on and on about the things that I’ve seen since my diagnosis that I never thought I would see.  I have been given an unfathomable amount of grace.  More than I could have ever dreamed of.

I don’t want to have chemo again.  That’s the truth.  It is not much fun.  But as JD said just yesterday when I asked if he was sorry he had a wife with cancer, “Of course not babe, it’s just the hand we’ve been dealt”.

And I think that is the truth.  We are just dealing with what we have been given.  Some days we do it better than others but we are good.  We are dealing with this as anyone with a chronic disease copes with it.  There are going to be times that it rears it’s ugly head and we have to deal with it.

And deal with it we will.  I don’t know what is ahead.  But I know that we are loved and cared about by so many.  We have support that most people don’t.  We are the most fortunate of people.

God is still good.  I still trust in Him.  I still believe that I am firmly in his hands and that he cares for me and my family.  He has shown his faithfulness time and time and time again.

All will be well.

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Fifteen

Today you turn 15.

Field Hockey Girl

Field Hockey Girl

That really just takes my breath away.  How has this happened right in front of us in what seems like an instant?

You are the full swing of high school.  You are rarely home on the weekend nights anymore.  We get a quick smile and hug as the door bangs shut behind you on your way out.  I’m lucky, though.  Many nights after you come home you sit on my bed and tell me some details.  I’m so curious and want to ask a million questions.  I try to limit it to just a couple hundred.  I also bribe you and your friends with food at every opportunity just so I can be around you and listen to your conversations.

Maybe I shouldn’t give away all my secrets.photo(3)

You are a joy.

We are so glad you are ours.

 

Posted in Kids | 3 Comments

Visitation

I go to an alternative medicine clinic close to my home where I get a combination of treatments all geared toward making my immune system as strong as it can possibly be.  They try to accomplish this in a variety of ways including acupuncture, chiropractic therapy and energy work.  Truthfully, I’ve had the most trouble with accepting the energy work as a real thing and not just some voodoo waving around of the hands.  I’m logical in my thinking (despite what my husband sometimes thinks) and it’s just hard for me to let go and accept this thing that I cannot see or touch.  Mostly I try to just lie there and not giggle and I usually sort of pray for healing through whatever hands are touching me that day.  I can’t explain it, but as I’ve given over to it more and more over these months, I am confident that something is happening.  I feel better after my sessions in ways that I cannot totally explain.

Last week was my monthly appointment.  When my normal energy therapist came to get me she had a new woman with her.  Linda introduced us and asked if I would mind if the new employee (let’s call her Sue) worked along side her today.  Of course I didn’t mind.  The more the merrier in my mind.  I lay down on the bed and closed my eyes.  I could feel both of them sort of walking around me and placing their hands here and there.  The new lady was a tiny little thing.  She gave off this amazingly calm aura and hardly made a sound as she moved around the room.   She and Linda exchanged a few words but I mostly just lay there trying to relax and receive from them whatever I was supposed to get.

I felt Sue standing by my left side with her hand on my hip and I opened one eye just enough to catch a glimpse of her hands.

Her hands were my grandmother’s hands.  My Daddy’s mama that helped raise us, lived right next door to us and made the world’s best yeast rolls for every Sunday dinner for as long as I can remember.  She died in 1995.  We still miss her.  Her hands were not beautiful in the conventional sense.  Years of arthritis had made them a little lumpy and bumpy with big knuckles.  They were small and worn and so soft.  They should have been hard and calloused from the years of hard work she had done and the hoe that she wielded every day in the summer keeping the garden weeds at bay, but they weren’t.  They were as soft as your favorite t-shirt.  I’m sure she would credit the Corn Husker’s lotion she used every day, but I think God just gave her that little gift.

The hands that lay quietly on my hip were those hands.  And in that moment I felt my grandmother’s presence so strongly that I half expected her to be standing there smiling down at me.  But it was just Sue, standing there with her eyes closed as if she were concentrating on something very important.

Tears ran silently down into my ears as I  let myself feel the love of my long gone grandmother.  Sue moved to my head (still with her eyes closed) and started to place her hands on my temple when all of a sudden she said,

“Wow.  You are really giving off some energy.  Are you thinking of something emotional right now?”

I told her how her hands were just like my grandmother’s and how I had felt her in the room with me.  She didn’t even blink.  She said, “Well.  When I come into a room to work with someone, I always ask my spiritual guide to help me.  Sometimes other people just show up.”

I’ve often thought that I’d love to have another day or two with my grandmother.  I thought that if that were to happen that I would have her make her rolls again so that we could finally get the recipe right or that I’d ask her more questions about how she and my grandfather met and other details of their life together.  What I didn’t realize is that what I really needed from her was just her touch.  A touch that let me know she was still with me and that it was all going to be okay.

Thank you, Grandma.  Come back again sometime.  I love you.

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Spring 2013

I took a walk this morning.  I take Lucy and set off down the street.  I say hello to neighbors and wave at friends dropping their kids off at the elementary school where I’d just let Elena out of the car not long before.  It is a cool cloudy morning.  The trees and grass are still wet from the storm that swept through at about 1am and I occasionally feel raindrops that fall from the trees I’m walking under.  The air smells fresh, like it does after a good storm.  Everything looks washed clean.

I turn to walk through the park and I notice that for the first time in months, I can walk at my normal pace and I’m not winded by the time I get to the top of the hill that occurs about halfway through.  I continue up the next hill and the next and I’m doing it.  I’m walking fast and breathing hard, but I’m not panting and I’m not feeling like my heart is going to thump right out of my chest. And when I meet a friend who is out for her morning run and she asks me if I’m a runner, I say “I used to be and I’m thinking about starting up again.”  And I mean it.

I’ve been on a break from treatment.  My last chemo was given at the end of January.  After two and a half years of pretty constant treatment I was feeling pretty beat up physically, emotionally, and spiritually.  I did not share the depths of my despair with anyone except my husband and I did that only reluctantly.  Because while I appear to be the gal that will tell you anything and everything and more than you ever wanted to know, I tend to keep the really hard stuff buried deep and tightly held.

So together with Dr. Eyelashes, we all decided that I would take some months off.  There was so much coming up and I wanted to feel good for all of it.

It has been so worth it.  I had an amazing birthday celebration that was never ending.  I went on an incredible spring break trip to the beach and just had a great weekend with Elena in New York City.  And I was fully present for all of it.  I feel like my old self.  I’ve lost weight and the puffiness in my face is gone.  My hair has grown back in (a bit) and I am no longer wondering how much longer it will be til I can go back to bed after I get up.

I’ve taken a break from cancer and it has been wonderful.  Part of that break was also stepping away from writing here on this space.  I tried a couple of times, but I just wasn’t finding the words and I’ve never wanted to write just to put words on the page.

This morning I felt the urge to write well back up in me.  Thank you to those of you who have been wondering where I was and worrying about me because of my silence.  I just had to walk away from being “cancer girl” for a while.

I’ll have a scan in a couple of weeks.  Of course we are praying that even in the absence of treatment, the cancer has not come back.  If that is the case, I will continue to be on this break.  If we see activity, I will go back on the same treatment I was taking.  I feel strong enough to tackle it again and because I did not become resistant to it, believe it will continue to work just as it always has.

Another spring has come.  The third since my diagnosis.  We can hardly believe the grace that continues to abound.  It’s a time of new beginnings.

I’m so thankful.

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Breathing Again

I didn’t even know I’d been holding my breath.  But I certainly must have been, because  I could feel my lungs expand as if I’d suddenly broken the surface of the water after a mighty long swim from the bottom.

“I don’t see anything that concerns me.”

That would be Dr. Eyelashes giving me the news on my latest scan.  Usually I make an appointment to go over everything with him in his office, but this time we decided that he would just call me.  I’m not sure I’ll agree to that again.  With an appointment I know when the torture of not knowing will end.  This time I was just on pins and needles all day.  Trying to act normal at lunch with a new friend.  Trying not to check my phone every five seconds in case I’d missed his call.  I don’t know how that could have happened since I had the ring tone turned up loud enough for my friends in another state to hear it.

When the call finally came I was standing looking the vast array of cheeses at my local market.  I hope people passing by just thought I was crying over all the lovely types of brie I was contemplating, but the truth was that I just couldn’t keep the tears back.  And then all the adrenaline that I’d been carrying around all day hit and I was still shaking when I handed my credit card over to the sweet cashier who always tells me she is praying for me.  Lordy mercy.

The good doctor and have been talking about taking a treatment break if this last scan was a good one.  We will have to wait on the final read from the radiologist, but we are not expecting any news that would alter our plans.  There are a couple of nodes up near the top of my trachea and behind my thyroid that we have been keeping an eye on.  They don’t seem to be changing but they also don’t seem to be going anywhere.  They do not worry my oncologist and so I mostly choose not to let them worry me.  My sister wants them to go in and just remove them and that is certainly something I’ll talk to the doctor about.  Conventional wisdom would say that it wouldn’t make any difference in the long run, but we strayed off that path long ago.

So I’d ask for your prayers as we make some hard decisions in the next couple of weeks.

And thanks for all the good wishes.

xoxoxoxo

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Warning: I’m about to brag

Katie has been involved with a thing called Power of the Pen for the last two years. Basically it is a creative writing contest consisting of tournaments on the district, regional and state level.  I’m sad that it is only available in Ohio because it is a fantastic program.  The kids are divided into groups of 5-6, given a prompt and the clock starts.  For forty minutes they write fast and furiously.  Their papers are read by a set of judges and scored.  There are three rounds and at the end of the each round the number one ranked paper in each group is read by a separate group of “master readers” and a top paper from each round is selected.

During the awards ceremony the top 15 writers from both the 7th and 8th grades are announced.  The top paper from each round is also given an award and finally, the team awards are given out to the school whose team scored the highest overall.  There were probably about 180 writers there yesterday divided pretty evenly between the two grades.

Okay, so this is where the bragging starts, and if you aren’t family you might just want to stop reading right now.

You’ve been warned.

Katie placed 11th overall for the 8th grade and took the award for the top paper in round 1.  Her 8th grade team took the first place team trophy.  Another of her teammates took 2nd place overall and the 7th graders from Oakwood also had a very strong showing.  We were so very proud of all of them.

Here is Katie’s paper that won best of round.  The prompt was:  If you laugh at yourself, nobody else will beat you to it.

And I am officially finished bragging.

For now :)

Laughing

 

            My mother always told me that to be able to laugh at yourself was the most important skill out there.  She said that everybody would respect you if you had this ability.  But whenever I try, it always turns out badly.

Where I live everything is white.  They say that color excites us.  Everything is made out of cold, shiny metal, so gray that if you look at it for too long, you can feel yourself starting to shiver, as if your soul was slowly turning into ice and if you hit yourself with a hammer you would slam into the floor and shatter into a million pieces.

It’s lunchtime.  Normally you stay in your room with its white-as-a-dove feather bed and one single solitary chair.  At meal times and outside play however, you can leave that horrid room.

Betty, the nurse, opens my door.  Her brown hair is tucked under her white cap.  One button is undone on her dress today, revealing her fleshy skin underneath.  It’s hilarious!  I start to laugh.  The sound resonates off the furniture and bounces into the hall.

“Mr. Bohman, Mr. Bohman,” Betty says, stepping into the room, “it’s time for the midday meal.”  She steps closer to me and her heels sink into the carpet.  She grabs my arm.

“Oh!  A little rough today, aren’t we?  A little feisty!”  I smile and start to cackle again at my own wit.

“Come on, Mr. Bohman.”

We walk down the hall.  We pass no pictures or paintings on the wall:  no mirrors or flowers can be seen.  “Too exciting,” they say.

Entering the kitchen, moans and cries filter through the air.  Some people just like to complain.  Others, like me, just find the joy in life.

“Joeyyyy!  My man!” I shout across the room.   A man, my friend Joey, raises his head and pretends to shoot me with two fingers.  I double over, then straighten up, both Joey and I laughing hysterically.

“Mr. Bohman, Mr. Bohman, stop.  You’re sixty-three.  You are much too old to be playing games like this,” Betty says to me, her hips firm and her eyes cold and hard.  She pulls me up to the first counter and we pass a sign that reads” Oklahoma Mental Institution”.

“Oatmeal or chicken soup?” she asks, gesturing.  I look at the food and shudder.  The oatmeal?  More like oat-vomit.  The soup?  Well, I don’t even know where to start on that one.  A silver spoon sticks out of the oat-lump and an idea pops into my head.

“Light bulb!” I shout and grab the spoon.  A cold, gray, oozy lump of oat-gross clings to its metal surface.  I grip the spoon and launch it over my head, back towards the eating area.  It smacks the sign, which now reads “Oklahoma Me_tal Institution”.

“OH MY GOD,” I cry, doubling over in hysterics, “METAL INSTITUTION!”  Waves of laughter roll through my body, similar to the waves you see at the ocean, rolling into the sand and spilling onto towels and sand castles.

“Mr. Bohman! Stop! Control yourself!  Remember what the doctor said!” Betty warns.

“Too late.”  I manage to squeeze out.  I’m on the floor now, rolling back and forth on the white tile floor.  Betty hits a button on the wall and two giant men come barreling through the door, startling a few patients.  One of them, an elderly woman, starts to cry.  They reach me and grab my legs and arms, pinning them to the floor.  A giant needle shows itself and one of the men inserts it into my arm.  I scream as the cooling fluid sifts its way into my bloodstream.

I wake up on my bed, laughing.

Posted in Bloggable Moments, Family, Kids | 10 Comments

Tumbling Down

“Mama!  Daddy fell off the ladder and hurt his ankle!”

I’d just gone upstairs to lie down.  The chemo I took on Wednesday was taking its toll and I’d been looking forward to snuggling down under my electric blanket for an hour or so.  I get chilled easily these days and I could almost feel the warmth coming off the bed as I slipped between the sheets.

I went downstairs to find JD sitting on the couch.  He’d already gotten both shoes off and was looking at his ankles with a grimace on his face.  He was ghost white and shaking.

He’d put the ladder up against the house in the front to take the last of the Christmas decorations down.  We will never know exactly what happened but the ladder slid out from under him, he dropped about 10 feet and landed on both feet on the front stone porch.  He was able to get into the house under his own power, but now his ankles were both looking very ugly and were actually swelling right before our eyes.

“Hmmmm.  I guess we better go to the ER.”

And so we did.  Five hours and two splints later we were back home again trying to figure out how to get someone who can’t really bear much weight on either leg up the stairs and into bed. (There was lots of grunting and moaning involved).  The x-rays taken at the hospital didn’t reveal any bad fractures but we will wait on the final reading on Monday and probably see ortho sometime next week.

I’ve been reading a book about excess lately.  One of the chapters deals with the business of our lives.  The way we say we have no time but continue to add things to our calendar anyway.  We can’t find it in ourselves to say no even when it is driving us crazy.

So perhaps this is a gift.  A time that will force us to slow down.  Today we have spent the day reading the paper.  The girls are quietly doing their thing and Lucy is wondering why no one is moving around much.  We are perhaps resting on the Sabbath for the first time in a very long time.  The tv is off, a pot of soup is on the stove and snow is falling periodically outside the big picture window in our den.

We are so thankful.  It could have been a whole lot worse.  I’m sure there will be some frustrating days ahead as JD gets back on his feet, but for now we will appreciate the good that comes with the bad and enjoy a little slower pace for a few days.

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North and South

We always laugh about the difference in conversations that go on between people when we are in New York visiting JD’s family and in Tennessee visiting mine.  We think we have the best of both worlds in this crazy mixed culture marriage of ours.

Case in point.

The last time we were at my house we were walking up to my brother and sister-in-law’s house along the 1/4 mile driveway that connects their house with my parent’s abode.  We were stopped in our tracks by a mound of scat (translation: poop) in the middle of the road.  Thus commenced a five to ten minute conversation on just what animal it came from.  We started off with the possibility that it was bear poop as there have been some recent sightings of black bears on the mountain.  (The children are no longer allowed to walk between the two houses after dark.)  We then decided maybe it was a smaller animal and I believe we settled on a fox as the culprit before heading on our way.

Cut to JD’s house just a couple of days ago.  We were sitting around the table playing a game with JD’s father and sister and a few of the kids when a classical piece of music came on the radio.  Either JD’s mom or dad said, “What is the name of that piece?” and without a second’s hesitation his sister named it correctly.

See what I mean?  The perfect mix.  We love our families.

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I’m Still Here

Well.

I guess that is what you would call a little blogging break.  I’m not really sure what happened but it just seemed that I’d used up all my words for a while.  JD would tell you that that is just not possible, but there you go.  Apparently, even someone with A LOT to say has to shut up every now and again.

Lots went on in the month of November.  I’ll just hit the highlights for those of you with the stamina to endure such minutiae.

First of all a big thank you for all of you who supported the Free to Breathe event this year.  My team raised over $4500 dollars and won the prize for highest fund raising team for the THIRD year in a row.  Thank you, thank you, thank you.  A million times still would not cover it.

My baby turned 11.  She is a force of nature, that one.  I just keep telling her, “Use your power for good.” Luckily she is only partially aware of the effect she has on people.  When we were home for Thanksgiving she curled up on my brother’s lap at one point and snuggled up all close and I’m pretty sure he would have bought her a car at that moment if she had asked.  Lordy mercy.

We had a great Thanksgiving with my family in Tennessee.  Thanksgiving was not delayed by the butchering of deer this year and the pot full of boiling oil did not burst into flames so we are calling it a success.  We had a great time together.  We visited Rock City and saw all the gnomes and Christmas lights which was a lovely way to start the holiday season.

But perhaps the most fun we had was going out to scope out the 5000 acres of land that a Mennonite group has bought close to my parent’s place.  We saw a few of them and you would have thought we were sighting Sasquatch or something.  We did get a bit confused because we saw some in a car but also saw some in a wagon and we thought perhaps they were Amish instead but that didn’t really make sense.  JD started calling them Amonites, but that sounded like something out of the Book of Mormon and that didn’t seem right, either.  Clearly, we are easily amused and God bless those people for not calling the cops on the car full of people that kept driving around their roads waving at them and grinning like idiots.

Last Monday I had an MRI of my brain.  I’d needed to have it done for a while just to make sure things were okay.  I wasn’t having any symptoms that made us think things were going badly, but my anxiety was sort of climbing so I finally had it done.  Thank goodness it was fine.

And so here we are.  Today was the first Sunday of Advent and we were reminded that Advent starts out in darkness.  It is a season of waiting.  I am going to try to take that to heart this year.  I don’t want to rush the season and I want to focus on what is important.  Easy to say and very hard for me to do.

550 words later it is clear that I have found a few of my words again.

Whew.  I’m sure that’s a relief for everybody :)

Posted in Faith, Family, Health, Holidays | 6 Comments