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DSC_0076 (2)Dear Katie,

I heard you before I saw you and the breath caught in my throat.  The new heels we had bought just a few hours earlier which completed your homecoming outfit clicked as you made your way across the hardwood floor in our kitchen.  You wanted to put everything on at the same time to see if the overall look was what you wanted and I knew you wanted to show me.

I didn’t want to turn around.

I knew that when I did, I’d see this tall willowy young woman standing in front of me.  That you were growing up at what seems some sort of weird hyper speed and leaves your daddy and I shaking our heads at how fast the time has gone.

But oh how wonderful it is.  To watch you grow older and into yourself is a gift that we do not take lightly.  To see you start taking the baby steps into your future that we just know is going to be more that we could have ever hoped for is so exciting.

We love this age.  We love that you are a walking contradiction.  The way you are taking more and more steps of independence but still ending most nights either snuggled in my bed or yours talking over the events of the day.  The social girl that sometimes still just asks for a movie night with the family.  The tough as nails field hockey goalie who still cries in sympathy with anyone she loves who is crying.

We love your friends.  Even though you are SO LOUD!  There were 13-14 of them in our basement recently and you were all watching a scary movie and screaming.  Of course I could hear you over all of them.  What a great group of kids.  You have chosen so well.

We love your faith.  The way you are making it your own.  The way you are choosing to share it with the world.  What more could we ask for?

We love all of it.  We love you.  You make us proud every single day.

All of this flashed through my mind as I heard you walking toward me.

I turned around.

You took my breath away.

Happy Birthday dearest girl.  We love you to the moon and back.

Katie and some of her fabulous friends before homecoming

Katie and some of her fabulous friends before homecoming

 

 

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When the world seems to have gone crazy

Within the last four days, there have been so many shocking things happen in our little part of the universe that I actually asked JD last night, “Has the world gone crazy?”  I have started to be afraid to pick up the phone or look at social media.  Afraid of yet another thing that will shake me to my core.

A friend died suddenly after his morning run, leaving two children and his loving wife to mourn his much too early passing at age 44.  It seems impossible to imagine the world without his bigger than life personality.  There were a group of 4 couples who were close friends when we were young marrieds and just starting our families.  We would meet once every two months at one of our houses or the other.  We moved and then they moved and we all fell out of regular touch but occasionally would run into each other and be awfully glad to catch up.

A friend sends me a message telling me of a heartbreak that I can’t even begin to wrap my head around.  She is grieving and angry and confused.  I’m angry for her.  And feel completely helpless.

Another friend’s mother just died.  I hadn’t known that she was ill but I could see the raw grief in my friend’s face.  I had no words of comfort for her.  Who is ever ready to lose a parent?

The easy thing to say is that God has it all under control.  But frankly, it doesn’t always feel that way.

I have a child who is struggling with believing in God.  Mostly I’m okay with that.  She has to wrestle with her faith and figure it out for herself.  I’d be lying if I said there weren’t days that I sometimes have a hard time believing myself.  I don’t understand why things happen as they do.

I just keep hanging on.  Perhaps that is all any of us do.  Hold on to our faith even when we can’t really feel it.  Even when we can’t see the end of the road or the end of our grief or the end of our sadness.  Even when the whole world seems to have gone crazy.

 

Posted in Faith | 3 Comments

Things I’ll never get used to

I never have gotten used to the cold.  Lying in the dark room after being injected with the radioactive tracer that will show the status of my journey with lung cancer, I always get so cold.  Part of it is that they keep the room very chilly.  Part of it is that I have a hospital gown on.  The tech always tries his best to keep me comfortable.  He gives me a warm blanket before closing the door behind him and always says to let him know if I need another one.  Another one doesn’t really help much.  The heat leaves my body faster than the blanket can replace it.

I’ve never gotten used to the wait.  The time between now and tomorrow when I will know at least the preliminary results.  Whether the chemo is continuing to do its job or we will need to explore other treatment options.  It is a long couple of days.  I alternate between full on panic and total peace.  Sometimes within the same minute.  Any twinge of my now middle aged body takes on sinister meaning even though nothing really feels any different than any other day.

But guess what else I’ve never gotten used to?

I’ve never gotten used to the love that pours out from so many over these days.  The texts and phone calls and messages that tell me people are thinking of me.  Sending me love.  Saying mantras and prayers for me.

I’ve never gotten used to the way that God continues to pour his grace out all over this situation through all of you.  He lets me know that even though we are well into our fourth year fighting this monster, I am not forgotten.  Not by him and not by you.

I’ll never, ever get used to that.

 

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Sometimes you need help

I’ve been pretty gobsmacked by the news of Robin Williams death by suicide.  It seems impossible that the mind that produced all that wonderful talent also held such darkness that ultimately he could not see to the other side of it.

At first I felt a little angry at him.  How dare he throw his life away like that.  What about his wife and children.  Why was the thought of them not enough to keep him from putting that belt around his neck and pulling it tight?  How could he be that selfish.

Then I felt like a hypocrite.  Because I know what horrible illnesses depression and addiction are.  I know how they can get the best of you.  I know that they make you do and say things that you would never do if you were in your right mind.

I also know what it is like to live with an illness that carries such a stigma.  It’s hard.  It’s really hard.

So I’m going to tell you my little story.  I’m not trying to compare myself to Robin Williams.  I don’t pretend to know what led to that terrible decision for him.  But if we want people to get help and not feel shame in doing it (in general–again, I know only what has been reported about what help he sought), then we have to speak out.

Leading up to Thanksgiving of last year things appeared to be going great.  I’d been off chemo for several months and my scans remained clear.  I was back to work full time.  The kids and JD were all well and happy.  Life felt completely normal.

Almost.

The almost part was the heaviness that I carried around in my chest all the time.  It rarely ever went away.  It was worse in the early morning hours when my head would spin and my heart beat fast.  I felt anxious all the time.  There was always this feeling of impending doom that had no basis in reality.

I tried all kind of holistic things.  I did acupuncture, yoga, meditation, prayer, vitamins, exercise and none of it worked.  I gave myself a severe talking to.  Telling myself that all was well and there was no reason to feel anxious.  I gave it to God.  I gave it to God again.  I gave it to God a third and fourth and fifth time.  I tried all kinds of exercises and mind tricks that my wonderful integrative medicine doctor (Dr. Steve) suggested.

Nothing worked.

I felt like a failure.  I’d made it through so much.  The hard chemo, the loss of my hair, the feeling tired and sick and sick and tired.  I was perky cancer girl, for Pete’s sake!  Why now, when everything appeared to be going so well, did I feel myself falling apart?  I felt like a failure.

Finally, one day, Dr. Steve came in the exam room, asked me how I was, and when I replied in a tiny little voice, “Oh Good!  I’m fine!!!”, he turned to me and said, “Just stop.”

“I can feel the anxiety jumping off you from across the room.  It’s time for some pharmaceutical help.”  And when I protested he just gave me that look over his glasses and wrote out the prescription.

I burst into tears.  I felt so relieved.  I knew it was time, but I just couldn’t make myself ask for the help I needed.  I don’t know if it was my pride, my performance issues, or just general pig headedness, but I couldn’t do it.  If I’m perfectly honest, I felt a little bit like a failure because in this instance my faith didn’t seem to be strong enough to pull me out of this thing that was sucking the joy right out of my life.

Within two weeks of starting a low dose of an antidepressant, I was feeling better.  The pressure in my chest was gone.  The feeling of impending doom was gone.  I felt like I got my life back.

I took the help that was offered even though it was really hard.  In fact, it was one of the hardest but ultimately best decisions I’ve ever made.  The joy returned to my life.  Sure, I feel like a total cliche–middle aged suburban housewife on an antidepressant–every time I pick up my bottle from CVS and have to stop myself from launching into an explanation to the poor soul behind the counter, it is worth it.

Sometimes you need help.  Even if it’s hard.

 

Posted in Cancer, Faith | 8 Comments

Because I mostly do what I’m told

I write this some trepidation.  I expect that this post may make some of you uncomfortable or uneasy in some way.  I apologize in advance and ask that you extend some grace as I tell you this story.

I have mentioned before that my grandmother has visited me at times while I am having my various treatments done.  It has always happened when I am being treated by my alternative caregivers who would be the first to tell you that they are very in tune to the energy (some would say spirit world) around them.  It doesn’t happen every time and I don’t ever try to make it happen.  But happen it has.  Not only my grandmother, but others have shown up as well.  A dear pastor who was very close to me and my family until his untimely and tragic death in a motorcycle accident in 2003 and family members including my other grandmother, my grandfather and a few more have made themselves known.  Not in a physical sense, of course.  It’s just a very clear feeling that they are in the room with me.  Watching over me.  Interceeding on my behalf.  It is so comforting.  It is never scary.  Never feels weird.  It just feels like love.

So I’ve come to believe that the spiritual world is separated from our physical world by the thinnest of membranes.  I don’t claim to understand it but I just sense that, at least for me, that is how it works.

A friend of mine told me about a visit to a (and here is where I need you to hang with me for a bit) woman who acts as a medium.  She had a wonderful visit with her and felt very comforted by the experience.  So I decided to go.

I don’t really know what you may be picturing but I’ll bet it is not the middle aged suburban woman who greeted me at the door and led me to a bright cheery room with a table piled high with the things that get dumped on any flat surface and a very comfortable couch and chair.  There were no dark curtains, crystal balls or tarot cards.  Just a woman who basically looked like any other one of my friends.

She told me that she just opens herself up to the spirit world and then she sees who shows up with something to say.  She described it as feeling and fleeting images.  Impressions of things.  Some of which are right and some of which don’t make sense.

Over the next hour she told me things that were astounding.  Even if she had known anything about me and googled me there is no way she could have come up with some of the information she shared with me.  She asked no questions before we started other than if I had anyone in mind that I’d like to hear from.  All she wanted was a yes or no answer.  No names or details were given.  She shared some things that I can’t wait to share with my family.  Some things that they will be so happy to hear.

My grandfather and grandmother who lived next door to us all during my growing up years both showed up with things to say.  Some where surprising and some were just what I would have expected.

And this brings me to the whole point of this never ending blog (thank goodness, right?)

Near the end, she said she was getting the sense that they wanted to tell me something abut the arts.  I thought she had gone way wrong because although my grandparents were many things, patrons of the arts they were not.

She asked if I was a writer.

Well, kinda, I guess.  It feels weird to call myself that but I suppose I am to some degree.

“They want you to know that you should start writing again.  It’s time for you to pick it back up.”

My grandparents never read anything I’ve written because the first thing I ever wrote was a eulogy for my grandmother’s funeral and I’m not sure my grandfather was in any shape to even hear it.

And because I would have always done anything my grandparents ever asked me to do, here I am.

Thanks for indulging me.  I swear I haven’t gone to the dark side.  It was a peaceful joyous experience and I’m so grateful to have had it.

A great cloud of witnesses indeed.

Posted in Family | 6 Comments

That time I lost my voice and then hopefully found it again.

I had a recurrence of my cancer in Feb.

Well.  Actually it was before that.  I woke up one morning in January and was hoarse.  I occasionally get a little case of laryngitis.  My voice goes out for a day or two and then gradually comes back.  This felt different.

For one, it was really sudden.  One day I had a normal sounding voice and the next day I didn’t.  It also sounded different and I felt like I was running out of air when I would speak.  I would have to stop in the middle of a long sentence to take another breath.  It was tiring.  I also felt like every time I drank something that a little of it would go down the wrong way and I would cough for a bit.

So we weren’t really surprised when the scan I had in February showed a little bright spot up near my heart.  It wasn’t very big, but evidently had decided that it would grow right on what is called the recurrent laryngeal nerve.  It had taken out the left side of my vocal cord leaving me with a deeper, raspier and rather breathless sounding voice.  Sort of like Demi Moore with a touch of emphysema.  It was inoperable which was really disappointing and such a relief all at the same time because who really wants their chest cracked open?

I started back on chemo.  The next scan showed the mass had gotten smaller and less active.  I eventually had a filler injected into my vocal cord through the front of my neck.  That was absolutely just as fun as it sounds but it did improve the breathlessness I was feeling if not the tone of my voice.

I’ll have another scan this month sometime to see what is what.  I feel really good.  We have had a wonderful busy summer.  We made trips to Michigan and Maine and I’ve decided I could live in either of those places.  (JD thinks I’d change my mind come February.)  We celebrated JD’s parents’ 50th wedding anniversary with his whole family.  We saw the girls off to their various camps and then welcomed them back with relief that they are not gone for good.  I’m not quite ready for the empty nest just yet.

And I’ve continued to be amazed at the grace we are shown each and every day.  I can’t tell you how many people still stop and tell me that they are still praying for me.  That they continue to check my blog for updates even when though I rarely wrote this past year.  A church in Arkansas faithfully send me a card every week and the recovery room nurse that took care of me when I got my port way back in the beginning still writes encouraging notes to me that arrive on the very day that I need them.

Such faithfulness.  Such grace.  Such mercy.

Such thankfulness.

And now I think it is time that I found my writing voice again as well.  Tomorrow I’ll tell you a little story of how I came to that conclusion.

 

Posted in Cancer, Faith, Family, Health | 14 Comments

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.

Posted in Uncategorized | 15 Comments

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.

Posted in Uncategorized | 27 Comments

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.

Posted in Uncategorized | 8 Comments