Monday, September 29, 2014

It's just life...

Today started a little bit quieter.  Steven received two units of blood, and in doing so, also received Benadryl.  Apparently chemo is no match for Steven, but Benadryl?  It gets him EVERY. TIME.



I spent much of the morning catching up on "ordinary" stuff.  I paid some bills, and made dentist appointments for the kids.  Both were reminders that life goes on.

Although it feels at times like the world has stopped spinning, I realize that hasn't.  In fact, on the drive to the hospital this morning, I realized that in a couple of days, it will have been a month since this current portion of our journey started.  There are days it feels like an eternity, and others it feels like minutes since our world was turned on its end.

****

We have spent almost a month now with the nurses and care associates on the 7th floor of Mercy and they have all been amazing.  The seamless way they make this uninvited time in our lives a little less strained has been an answer to a prayer I didn't even have the clarity to pray.

There has been numerous times that they have stopped me in the hall with words of encouragement. They have shared parts of their lives and in the process, became a part of our extended family.  Steven has this uncanny ability to connect with everyone on some level and, in the process, he has learned intimate details of the lives of everyone from the nurses to the ladies that come and clean his floor.  

I'd like to think that we are a part of their extended family too.  I'd also like to believe that the thoughts of Steven, and our kids, stay with them after they have left the hospital and that their prayers for him continue after they have returned home to their normal life.  After all, he isn't just a name on a chart.

He is a blessing to so many that have had the pleasure to know him and, I believe, that he is also a blessing to those who are, just now, getting the privilege to know him.

It was when passing the nurses station today that one mentioned the shirt I was wearing.  It was one that had been brought to me by my friend, Manda.  It was the same shirt that a very secretive, yet effective, group of people had made and wore to a benefit that was held for our family only NINE days after Steven's diagnosis.  These secretive people have never once wanted acknowledgement, or a pat on the back.  And, to me, that speaks VOLUMES as to the intent in which their generosity was displayed.  I will never know how many people were in this group and I will never be able to say "thanks" enough.

I have since found out that these shirts are being purchased and worn as a symbol of hope.  Hope for Steven.  Hope for those with leukemia.  Hope for the future.



It doesn't hurt that they are cool too. 

Who doesn't love a mustache?  Steven was sporting the handlebar mustache long before it was cool to do so.  Although, if you ask him, he will tell you it has ALWAYS been cool to do so.

And now, some of these same people that have worked with, and for, Steven, on the 7th floor of Mercy, want to show their support, and hope, for him, and his journey, by getting shirts of their own.  

This is so moving.  And, once again, I have no words.

****

Today a nurse also mentioned that she read my blog.  I'm not sure why, but this shocked me.  I even mentioned to Steven that I didn't even know how she would know about it.  

It's a smaller world than I've ever realized.

After she began saying nice things about Steven and I, I gave voice to some concerns that had been rolling around in my head, in an effort to set the record straight.  

It is imperative to me that everyone realizes that although my words may flow well, and paint an acceptable picture of our journey, it is no way meant to minimalize my imperfections or, for that matter, Steven's. Although, admittedly, he has fewer than I do.

Please note, I will never admit to saying this.

There have been people remarking on my strength despite my assurances that I am anything but.  There has also been little said about the day to day trials that we face.  

Everyday trials that everyone faces....

Lately there has been much focus on the big picture, leukemia, and the blessings and the curses.  However, in making this the focus, little has been said about the shortfalls, that namely, I have.  I am still the person I have always been.  Those weaknesses and imperfections are still there.  Sadly, cancer hasn't erased those.

There are times I want to have a pity party for myself.  There are times I find myself aggravated with my hard headed husband.  

Yes.  The same husband that has cancer.  

There are times I am short with the kids and just need a moment to collect myself.  There are times I have no idea what the "right thing" to do is.  There are times that my faith waivers and I find myself consumed in fear.

There are many times I just want my old life back.  

I'm not strong.  I'm not amazing.  I am deeply and thoroughly flawed.  

I am dealing with something I had never even imagined dealing with and I have no instruction manual that tells me the best way to handle it.

But, in Steven's words, words he spoke just moments after his diagnosis, "It's just life".  Although there are dark moments, and moments we'd like to take back and do over, as long as we are on life's journey, the only thing we can do is to keep moving forward.


I am not special.  I am no stronger than you.  I have moments everyday that I am not proud of.

I am not amazing.

I am just trying to make it through this life...with my entire family in tow and intact.

Please pray for us all.

Sunday, September 28, 2014

Where does my strength come from?


Yesterday it became obvious that "we were to the point" that shaving Steven's head was becoming almost necessary.

After waking up without a headache or a fever, and finding that his blood counts didn't require him to receive blood today, Steven was feeling good about his current situation.  It might have been that extra positivity that led him to feel that today he was strong enough to face the inevitable.

He admitted to holding out hope that he would be in that small percentage of people that didn't lose their hair from chemo.  However, after last night's shower, it was obvious he wasn't.

After some discussion we decided that when weighing the options of doing it after the kids had visited, but weren't present, vs. doing it with their help, involving them in the process made more sense to us.  

We knew that Steven wasn't the only one dreading this part of cancer.  

It would be this portion of the process that would be the first visible sign that daddy wasn't well.  It would be the first visible sign that daddy was currently fighting the biggest battle of his life.

This scared the kids, and I believe it scared Steven.

And although I didn't show it, I know it scared me.

Looking at Steven had been one of my biggest sources of comfort.  



He LOOKED healthy and it was hard to believe that he would ever come up against anything stronger than he was, especially when he looked as tough as ever.

But it was time.  Handfulls of hair didn't do much for his confidence and if he finally decided it was time, then it was time.  

The kids helped.

We originally went with a mohawk...you know, just because we could.



And then the kids slicked it on off.  


I wasn't surprised to find that he was as handsome as ever....and that he looked just as tough.

Maybe even tougher.

He decided to hang on to the mustache a little longer and the kids agreed.

They aren't ready to see that go.

Baby steps.



With a hat on he still looks like the same old Steven.

For now.

But after seeing him interact with the kids- playing, giving Lakyn a back rub, being the finish line in an outside race, and lifting them emotionally to the point they didn't care whether daddy had hair or not, I reminded myself that without a strand of hair on his body, Steven would continue to be my strength.

It wasn't his physical strength, or the appearance of it, that I had depended on after all.

It is his God given, mental and emotional strength, that, in my eyes, makes him invincible, and cancer doesn't stand a chance against that.

Saturday, September 27, 2014

Looking forward


The last few days have been uneventful in details surrounding Steven's treatment.  We are at a standstill at this point, waiting for his cell count to rebound.  His white blood cells are coming up and he will receive blood tomorrow to help jumpstart his red blood cells.  He is running a slight fever, 99.9, and has a small headache. 

I pray that both of these are gone by the morning.  Please pray that too.

*****

During the course of his treatment, Steven had been restricted to his room.  If he wore a mask, he was allowed to walk around a small portion of the 7th floor.  He had started being discouraged about the fact that "nothing ever changes" in the scenery outside the few windows he would pass by.  Last Saturday morning, the kids and I decided we were going to change all that.  I woke early and made a sign and then had them add their own touches to it.  My plan was to prop it up against a construction trailer outside in the parking lot that was viewable from a 7th floor window.  

However, last Saturday morning, after the kids worked on their project, it became apparent that Blake wasn't feeling well and couldn't come to the hospital to see his dad.  We decided that we would wait until we could all be there to celebrate the "change in scenery".

This past Thursday, Sarah brought the kids up.  I met them outside and she volunteered to be the sign holder.  She stood outside in the parking lot while the three of us rushed up to greet daddy in the hall. 
 
The kids asked if he noticed anything different in the "scenery".  It took him a second, but when he noticed, an "aawwww" escaped his lips before he enveloped the kids in a hug.



After he saw it, I raced down and took the sign from Sarah and brought it back and decorated his room with it.


Apparently, this change in scenery was a good omen, or a good sign (Cough, cough. Excuse the bad pun.) and not long after returning to his room we found that Steven had been given permission to leave the 7th floor and could even go outside in the hospital commons area.  

 
The mask he was required to wear was the only outward sign of his illness.  The kids were so happy to see him in his element:  the outdoors.

*****

We had to return to his room to meet a Child Life Specialist that was coming to talk to the kids.  Lakyn admitted she was a little nervous about it.  She has shied away from anything that prevented her from believing everything is fine and I think she was afraid of what the specialist might tell her.

However, the meeting was off to a good start when she showed up bringing gifts.  The kids hit it off with her and she showed them a doll with a port, like their daddy's, and explained about the medicine and some of the changes they could expect to see in Steven.  They were already pretty knowledgeable, probably because any information Steven and I receive, we pass on to them, but the CLS was able to put them more at ease.  


I was glad to see them interacting with her and asking questions, and sometimes, as kids do, showing off what they already knew.

*****

Earlier in the evening I had taken some pictures of the kids doing their homework in the hospital room.  




At home, I was always taking pictures, but since Steven's diagnosis, that had all but stopped.  I guess I thought that I would just put our life "on hold".  However, recently, when going through potential timelines of his treatment in my head, I realized that many monumental moments, including holidays, will happen, whether or not we are in or out of the hospital.  Life could not be put "on hold", so I might as well document it. Embrace it.

However, Lakyn didn't like me taking her picture and told me, "Don't take a picture of this. I don't EVER want to remember this time!"

I told her that I understood that, but, unfortunately, we will never be able to forget this time-with or without pictures.

I also told her that one day, we will look back on these pictures and see how far we've come.

I pray that this is the truth.  Please pray that too.

I also pray that we will get to a time where fear doesn't cloud our vision, and we are able to look back and see all the blessings we've received.

Please pray this too. 

 
I firmly believe it is your prayers that is getting our family through this. 
 
We need them.
 
Please keep them coming.


Thursday, September 25, 2014

Hard to Handle


I’ve been a little emotional the last two days.

No, I don’t know anything new.  No, there hasn’t been any change.

 It’s just me.  Probably hormones.  And some fatigue.

Steven felt a little drug out yesterday, and a little tougher than he had been feeling.  After two units of blood, he perked up.  I have seen evidence of his impending hair loss, but it isn’t something he wants to actively discuss.  I shared with him that some people recommended shaving it off, and having control over it, but he was aggravated that I brought it up, and stated that he “wasn’t to that point yet”.

I get it.  He’s mad.  Not about the hair.  Not about the cancer.  I think, primarily, he is mad at all he is not able to do for others, namely, the kids.  The hair will just be an unavoidable reminder of this.

I can understand his frustration. Although, I am sure not fully. 
I also feel as if I am running around, between places, and, sadly, I’m not doing any one thing well.  Unfortunately, I can't take this away from Steven and what I can do is limited.  I can't talk about the things that everyone has done for us without upsetting, and overwhelming, him.  I can't talk about the unknowns and uncertainties, because they are unknown and uncertain to him as well.  About the only thing I can do is be here for  him.  Physically.  And, some days, that seems to be all he wants.  Just my presence.  And I feel good about that.  Lying next to him gives me comfort.  If I am able to return comfort the same way, then it gives me purpose.


(I had to post this picture.  He looks SO handsome.  Those eyes...)

The kids understand his frustration too.  They are dealing with their own anger. 
They are angry their dad has to go through this.  It’s natural and I don't blame them.  However, like their daddy, they are not prone to dramatics, or screaming, or crying.  They don't talk about how bad they have it. 

No.  That's not their style. 

Their frustration and anger are funneled differently. 

Lakyn, nearing the precarious period of teenager-hood, was already showing signs of the attitude and dissatisfaction that comes with it.  Our current situation has magnified this. She has always shown respect to others, and I can’t imagine that this period of our lives will change that.  I pray it doesn’t.  But, as moms everywhere know, we, moms, don’t count as “others”.  Sometimes dads don’t either.  However, right now, showing attitude to daddy isn’t an option, and I am the one on the receiving end.  If I said the sky was blue, she would tell me it wasn’t.  If I said the grass was green, she would say it isn’t. 

But it’s ok. Really, it is. And at times I need to remind myself of this. I take deep breaths, which she always notices and comments on, and I tell myself that I should take it as a compliment.  It's a compliment that she knows I am her momma, and that I love her, and it's a compliment that she knows I am not going anywhere.  She can be difficult, she can disagree, and she can push me to the limits, but at the end of the night, we are going to snuggle and say “I love you” and go asleep knowing that tomorrow, we will face it all together.

Blake?  Well, Blake, just needs constant explanations about what is happening.
Constant. Explanations.
The more details the better, and he wants to feel he has control over it.  Right now, Blake is focusing a lot of energy and worry on the fact that we might not be home for Christmas. I am thankful that, in this time of uncertainty, the childlike excitement for the arrival and celebration of Christmas is still something he is thinking of.  I am relieved that he is focusing worry on the quality of Christmas, and not quality of his father’s health.

Kids shouldn’t have to worry about that. 

So, as of now, the timeline we are looking at, is as follows:
We are expecting to be here, in Springfield, for approximately another 10 days.  The doctor is hoping to have a one day visit/consultation at Barnes scheduled for us when we leave here.  If Steven was to be able to go home, it would, most likely, be for a night (or two) after leaving here and on the way back from Barnes.
Then, he will be readmitted to the hospital here in Springfield, for five more days of chemo, resulting in about a 21 day hospital stay.
If Barnes is ready for us, after that period, we would go then and there for the bone marrow transplant.  If not, we would start another round of chemo, which could, possibly, be done outpatient, and continue that treatment until Barnes was ready.
I pray Barnes is ready.  Please pray this too.
The sooner we get this process started, the sooner we can get it over with, and hopefully, our family can return to our "new and improved" life.

Wednesday, September 24, 2014

You take the good, you take the bad...

Thank you so much for your prayers. The doctor came in this morning and said his bone marrow was clear. This is what they were hoping to find. The treatments he has had so far are doing their job. This hasn't all been for nothing, and Steven said he felt like this was the first news we'd received that didn't start out with "unfortunately".

We needed this.

Steven told me yesterday that he believes that it is the prayers being said on his behalf that is keeping him from going crazy from being constrained. (Everyone who knows Steven knows this goes against everything that he is. He's a self-described "free spirit".) However, today, being constrained isn't much of an issue.  He probably has the least amount of energy that he's had so far.  The Benadryl they gave him doesn't help that issue, but hopefully the blood they are giving him will.  He still looks great, sounds great, and has the same sense of humor, but the pep is out of his step and he feels physically weak.

Even so, the prayers are working and we can feel the peace we are receiving as a result of them. Please keep praying...

*****

Not surprisingly, our children have been some of Steven's biggest cheerleaders. Last night Blake brought a picture that he had drawn at school. (We have many similar pictures in the window of Steven's room.) This particular picture had a (Ford) pulling truck that has "I ain't no chicken" on the bed, and "Lukemea Buster" on the front. The sled is decorated with "x cancer" and "cure it" and "kemo" is written on the track.

Lakyn gave Steven a surgical glove that she had blown up like a balloon. She used a sharpie to write "A Helpful Hand with Lucima" and "It's ok to be sad". On the other side it has written directions to squeeze when sad and the statement, "I will always be their." The five fingers say "sadness, love, kindness, helpful and brave."

Although generally a stickler for correct spelling, I pray this current road is so brief in the journey of their childhood that they go into adulthood not knowing how to properly spell Leukemia. However, the correct usage of "their" will be another matter entirely.


 

Tuesday, September 23, 2014

This is a test...


Yesterday Steven had his second bone marrow test.  Thankfully, he didn’t dread it because the first one wasn’t too painful.  The doctor had prescribed morphine and an anxiety drug to help calm him.  Steven didn’t want the morphine and the nurse said she was fairly certain he didn’t need the anxiety meds either.  After another call to the doctor, the nurse came back and offered him dilaudid.  Steven started to worry about whether or not the first successful bone marrow test was a fluke, and second guessed his decision to go without pain meds, since the doctor seemed to be so adamant for him to have it.

 

He finally consented to the dilaudid, but before the nurse was back in with the meds, the bone marrow team was in his room and ready to go.  Fully dressed, only needing enough of his hip showing for the test, Steven laid on his side. 

 

I told him this time I would stay with him. He told me that he worried that he would look like “a puss”.  I told him after 22 years, I was certain that he was anything but.

 

I held his hand and focused on his face, looking for any sign of pain.  The nurse started to administer the pain meds as the bone marrow team prepped the site.  Steven only winced once, when the second shot to numb the area reached the bone, but even then, I only knew of the pain because he pressed his eyes tightly shut. 

 

When the pain meds started to enter his body through his port, Steven said, “I don’t like the way this feels.  It’s making me hot.”  The bone marrow team commented he wouldn’t make a good addict.  Although Steven was completely fine, I found myself having the telltale ringing in my ears, coupled with a dimness in the room.  My mind revolted at what was happening and I internally scolded myself.  THIS IS STUPID!  HE ISN’T IN PAIN.  HE IS FINE.  You can’t even see anything!  How embarrassing!  You MUST stay upright and not give yourself away!”

 

Knowing we were less than a minute away from the completion of the test, I demanded that my body not betray me.  However, when the drill started, even though Steven didn’t make any sign to show discomfort, the room grew increasingly dim and the voices sounded miles away.  Thoroughly embarrassed, but knowing that it would be more embarrassing to have to be picked up off the floor, I immediately sat down.  Steven caught my eyes.  Were you going to pass out?”

 

I explained that for no apparent reason, I probably would have, had I not sat down.

 

He then said, “Looks like you were the puss”, and smiled.  I agreed that in comparison, I was most definitely the bigger of the two of us, but that my “swooning” was merely a result of staring at his face so long. 

 

After all, he is soooo handsome.  The nurses agreed.

 

After the procedure, Steven apparently started to feel the effects of the meds, albeit a little belatedly.  The nurse asked if he would like to go ahead and lie flat and Steven asked if he had to.  He was pretty comfortable where he was.

 

She told him he did have to.

 

So he flopped to his back.  Because he was almost positioned diagonally across the bed, with his head wedged in between two pillows, the nurse then asked if she could raise his bed or if he would like to reposition.

 

He said he felt really good where he was.

 

I’m certain that if he would have been lying on the cold tile floor he would have felt equally as good.

 

About 30 minutes later another nurse came in.  Steven and I had been lying together on the bed and she was going to check his vitals.  She asked how he felt.  He said, in a completely relaxed tone, “I’m chilling.”

 

Having had no idea that he was chilling, I immediately jumped up and grabbed the blankets to cover his legs.  He stopped me and looked back at the nurse and, in the same mellow, low voice, with his eyes only slits, said, “I’m chilling…..I’m relaxing……..I’m chillaxin.”

I think that he might be a better addict than we originally thought.

 *****

 

The doctor informed Steven this morning that the test should be back tomorrow.  He is hoping to find the bone marrow looking like a “blank slate” with nothing in it.  Hopefully, the next test, in about two weeks, should show the growth of healthy cells.  

 

For those of you that are praying, please continue to do so.  Pray that he is ultimately cured.  Pray that we remain of strong faith. Pray that the kids continue to adjust well. And, please pray that tomorrow the bone marrow test reveals that the treatment that Steven has already received has done its job. 

Monday, September 22, 2014

Sometimes

(Edited on Sept. 24, 2015 to add:  Originally posted a year ago - a little over two weeks after Steven was diagnosed.  It's amazing, and kind of sad, how much time has passed and how little things have changed...)

The past two weeks Steven and I have, unfortunately, settled into a new kind of "normal".  For him, the days all look basically the same.  Days and nights are spent in his room, or the surrounding halls.  "Nothing ever changes.."is generally his sentiment after making yet another circle around the same nurses desk that he has made for over two weeks.

However, after learning that we would ultimately end up in St. Louis for treatment, he has been adamant that I spend more nights at home with the kids.  So my new "normal" is constant change.  Home, hospital, home, hospital, work, ball practice, hospital, home...

I understand this.  Really, I do.  It's necessary and I want to be with the kids as well.  We were ALWAYS with our kids and not seeing them daily is the hardest part of this "new normal" for us.  All of us.  Although I am happy to be able to be home with the kids, leaving Steven at the hospital, and walking out of that room without him, is one of the hardest things I've ever done, because sometimes, there are just things that only a wife can do.

Leaving physically hurts me.

There is a fear of losing him, although I keep it pushed back, that screams at me to not leave his side because someday I might not have the opportunity to be there at it.  Touching his warm skin is about the only remedy to this fear and sometimes even that brings more tears.

*****

I have struggled with many emotions in the last 19 days, and recently feeling inadequate is up near the top of the list.  When I am home I am trying to catch up with the things I have neglected there, things that can't be put off any longer, or I am trying to get the kids ready for their next day at school.  My own home, and things that used to be second nature, now feels foreign. Of course, all of these things are made harder by the blaring fact that daddy isn't home. 

When dark settles, and the time to snuggle down in bed comes, his absence is made even more real.

We have been blessed beyond measure with family and friends that  have filled in and stepped up to help when we didn't even realize we needed it.  But, sometimes, there are just things that only a mom can do.

*****

Working for the past 15 years at the funeral home was another "normal" thing.  Going to work was something I did, and something I took pride in.  Just like wife, and mom, employee was another facet of myself.  I have tried to keep up with things at work on my end, even though they have told me not to worry about it.  Working remotely, or stopping by for an hour a couple times a week, allows me to keep up with the most pressing issues I need to attend to.  But many times, I know that what needs to be done, is for me to simply be present, and allow those who have been picking up my slack to take a well deserved rest.  Because, sometimes, there are just things that only this employee can do.

*****

My friends have saved me many times in my life by offering a needed shoulder, counsel, grounding me and giving me solid advice, or telling me when I was completely off base.  I hope I have also offered them the same.  I love my friends and I love being a friend.  But I know, in the midst of the chaos that is now my life, I haven't been much of a friend.  Although Steven and I are going through a tough time right now, I am under no illusion that everyone else's life is continuing on perfectly, without troubles or day to day aggravations.  These are the things that I would normally be there for.  Listening, laughing about how things always seem to happen, or simply joining in on their life journey by learning about the road they were currently on. 

I haven't done any of those things lately, and sometimes, there are just things that only a friend can do.

*****

Feelings of inadequacy in being a wife, mother, employee and friend, fill my mind, even though these feelings are mine alone.  I haven't had any one make any accusations, and I am not looking for reassurances from anyone.  I am just putting into words, the best that I can, the feelings that I struggle with, and try to fight.  I have always had a need to control things, and situations, and that need is being put to the test.  God is asking me to hand over the reins and for me to stop fighting Him for control. 

Because, sometimes, there are just things that only God can do.

Thursday, September 18, 2014

The L Word (Part 5)

Monday was another good day for Steven.  He had completed his chemo earlier in the morning.  Around 3 a.m.

We keep waiting for the bottom to fall out like they had told us it would, but he keeps going strong.  Like I said, he is tough.

I was planning on going home to be with the kids Monday night, when a nurse entered the room and told me that Dr. Holden had called and asked me to stay.  He would be in at 9:30 p.m.  It was 7:00 pm.

2 ½ HOURS

We could think of no other reason that he would want me to stay other than having received the bone marrow results.  My mind was racing and turning over every possible outcome in my head and lingered longest on the outcomes that would be the worst.

I was sick.  Again.

I had decided that morning that I didn’t need the meds anymore.  I was now rethinking that decision.

I wrote out a text to my sister asking her if she would come, because I thought we might need her.  I deleted it before sending it.  I had to start standing on my own.  As if reading my thoughts, a text came through.  Sarah and Dad were on their way up.

And the waiting began.

*****

Dr. Holden was thirty minutes later than expected.  When the door opened I took a deep breath.  He walked in, made small talk with my dad, and sat down in the recliner in our hospital room.

He started out by saying, “Unfortunately…. “

Unfortunately.

I took a deep breath and tears started streaming.  Steven later told me that he immediately got hot all over.

Unfortunately.

He continued by explaining that “unfortunately” the kind of leukemia that Steven has, AML Inversion 3, couldn’t effectively be treated here.  We would be going to Barnes in St. Louis.  He stated that he could continue treating him, and probably get him to go into remission, but that it would eventually come back.

We don’t want it to come back.

He felt that going to Barnes, and receiving a bone marrow transplant, would offer him a cure.  We would be there, in St. Louis, for at least a month.

But he could be cured.

I started breathing again, and started recovering from the “unfortunately”.  This was not ideal.  Not by far.  But it was better than not having hope.

Cure…with remission as the worst case given, seems doable.  (I am sure there are worst cases, but it wasn’t mentioned to us and I refuse to consider them at this point.)

But at times, the road getting there, seems to be so long.  A nurse warned Steven just today not to let the time frame get him down.  He is strong, but he is also a free spirit, used to working outside and not used to being caged. 

He will feel like he is caged.

In approximately a week and a half, we make our way to Barnes for what I understand to be a consultation.  I’m not sure how long that will take.  We will then come back to Springfield for two more abbreviated rounds of chemo. 

Then, we will be off to St. Louis again.  This time for a month.  My prayer is that when we return, Steven’s health will be on its way to being restored.  Please make this your prayer too.

*****

My hope is that this strengthens my children’s faith.  I know that they believe, I am sure that they question, I just hope they don’t doubt. 

Blake questioned how it was we discovered the leukemia and I said that it was simply fullness in daddy’s throat which ended up being simple acid reflux that brought him here and in the process of figuring that out, they ended up discovering the cancer.  He surprised me by lifting his face to the sky and raising his hands, and saying, “Thank you God!”

Unfortunately, I for one know that in one moment you can feel like your every prayer has been answered and the next moment feel as if God has turned His back on you. 
 
He hasn’t.  My heart knows this. 

But sometimes, selfishly, it just feels like it. 

It is imperative that my children learn to make the distinction between how you feel, and what is the TRUTH.  And I pray that I can impress the difference upon their hearts and minds.

Please pray for this too.
*****

Blake asked me while walking through the hospital, “Why did God decide to put our family through this?”
 
It hurt me that I didn’t know, and it hurt me that he had questions I couldn’t answer.  My mind, and my heart, answered “Why not us? Why someone else? Would their pain be less?” 
 
I told him what I believed.  I don’t know, but I have to believe that this is all happening for a reason.  There HAS to be something good that will come out of this.  We may not know right now, but someday we will know.”

He thought for a while and asked, “Like, when daddy comes back from St. Louis, and is cured, will I go to church and God will speak to me and tell me why this happened?”

I told him that God might answer him then, but most likely, he might not know until this life is over. We all may go our lifetime with unanswered questions, but I pray that my children have peace knowing that this disease, and Steven having it, will not be for nothing. 

Please make this your prayer too.

 

The L Word (Part 4)


I honestly don’t remember the rest of that day.

None of it.

I don’t really remember much of any of the past 2 weeks.

I DO remember my mom pulling me aside on Sunday; two days post diagnosis, telling me the kids were more worried about me at that point than they were Steven and I needed to get it together.  I thought I had.  At least, I thought I was doing a good job pretending that I had. 

Apparently, I’m not a very good actor.

A nurse, Chris, really hit it off with Steven.  I must not have been fooling him either.  A few minutes after leaving the room, he came back with another doctor.  A hospitalist.  This hospitalist was not an oncologist, but was the “most educated hospitalist they had, regarding oncology.”  He offered us encouraging words and used the word, “hopeful”.  He shared a story of a close friend that was almost in remission.  He gave me hope just by his presence.

I looked at the nurse, Chris, more calm than I had been in three days, and said, “You told him about me, didn’t you?”

He nodded and said he had.

*****

Dale showed up after the doctor left and I was in better spirits, but not in good physical shape.  Three days had taken a toll.

He motioned me to the hall and said, “I’m going to tell you something and you are going to listen.  You are going to go home, take a shower, fix your hair, put on makeup and when you see him next you are NOT wearing those sweatpants.  This will do as much for your morale as it will his.” 

Every day since then I have taken his advice.

*****

My friends, Manda, Lindsey, and Kristina showed up Sunday afternoon with more goodies.  They had been recruited, I believe, by my mom, although they didn’t admit it.  It was in sharing all the news, and the uncertainty, that they mentioned something about a fish fry benefit.

I told them that I didn’t even want to think of that, and that we would do fine.  We had tried to be responsible financially and although, not rich, we weren’t living paycheck to paycheck.  Granted, we couldn’t go long with Steven not working without making some changes to our life, but we could make it.  Steven and I had always said that we would sell everything we had, and downsize as much as needed, before we would ever ask for help. Or a handout.

My friends reminded me that we still hadn’t asked.

****

In the next week, 7 days after his diagnosis, Steven was visited over 100 times by friends and family. 

There were many times that laughter filled our room. Those times you could almost forget the situation we were in.  Steven joked that he came to the ER because he couldn’t swallow, and yet no one had looked at his throat.

Finally, doctors from an Ears, Nose and Throat practice came in and scoped his throat at his bedside.  Those Dr’s concurred what the Urgent Care doctor had said.  Acid.  Acid reflux is what drove my husband to the ER, and ultimately to the blood test, that detected the cancer that changed our lives.

****

The nurses and Steven bonded immediately, of course, but he said it was taking longer for him to “bond” with the doctor. 

Dr. Holden was an early riser, as was Steven, and would enter the room at 6:00 a.m. and turn on all the lights, and open the shade, which had been closed each night to block out the blinding west sun.

One morning Dr. Holden made a comment about it being 6 a.m. and he was already at work, and Steven should be up too.  Although I know he was well meaning, I knew Steven well enough to know that it stung a little bit.

This was the guy who would wake up at 4 a.m. to be at work by 6 on mornings when he had, at least, a two hour drive.  There were times he would have to wait for a landowner to wake up, because he would arrive on site so early.  Many nights he worked into the evening as well.

If we were in a battle of the hard workers, Steven was going to give him a run for his money.  Steven hadn’t worn hospital clothes since they told him he was ok to wear his own shirts, and I knew that not only would he not look like a typical patient, he wouldn’t act like one either.

The next morning, after coming home to be with the kids, Steven called.  His voice was filled with purpose.  A nurse had come in at 4:15 am to pull blood.  After she left, he put on his jeans, button down long-sleeve shirt, cowboy hat, and unplugged his “buggy” (IV cart).  He hit the coffee maker and started pacing the halls.  Between 5 and 6 am, Dr. Holden arrived. Steven spotted him booting up his computer and leaned over the counter and said, “Where’ve ya been?”

I think the line in the proverbial sand had been drawn.

*****

There were whisperings that cued me in that this fish fry was, indeed, going to happen on Sunday.  There were also whisperings that it had turned into something much bigger than anticipated.
 

I didn’t really know what to think, or to expect, and knowing I wouldn’t be there, couldn’t be there, to help, made me feel humbled and a little guilty. 

Steven too.
 
Why did we deserve this?  I still can't answer that.

*****

The kids seem to be functioning fairly well.  They were in high spirits for Old Fashioned Days that weekend.  In fact, one of the first things I made sure of, after finding out that Steven would be in the hospital for a month, was to make sure that someone could get my kids to Old Fashioned Days.

They LOVE Old Fashioned Days in Conway.  The turtle race, the duck pond, the crafts, the toys they buy with their money, and the concessions, equaled what they stated was a time “second only to Christmas”.  It came at a great time to take the kids’ minds off their current situation.

Blake, my thinker, would occasionally ask me to go over daddy’s condition, and what I knew of possible treatment options again.  Although I didn’t know much, what information I gave him always seemed to help.  Every time, he would nod, almost as if physically shaking the doubt from his head, and then state, “Daddy is tough.  He’s got this.”, and then he would go about what he was doing. 

Lakyn, my tough one, acted as if nothing was amiss.  Everything was business as usual.  She asked no questions and went about life as though staying with her aunt multiple nights in a row, and frequent hospital visits were the norm.  Knowing that Steven and I are without our children generally about two nights a year, I knew that this was nothing like business as usual.

One night, while updating some friends that had stopped by the house, I told Lakyn and Blake to take a shower.  When Lakyn returned, hair in a towel, she exclaimed that apparently, when she had fed the cats earlier, it had caused her eyes to get really red and watery. Both friends showed concern and Lakyn brought me allergy eye drops to help the irritation.

It was only later that night, with both kids snuggled under each arm, when Lakyn confessed that she had “broke down” in the shower.

I had suspected this, but was glad she was confident enough in me to tell me.  We all three said our prayers aloud and tried our best to go to sleep.

*****

The benefit DID happen and it was, from what I gather, larger than anyone imagined.  I still don’t know much about it, but I know where the pictures are when we find the strength to look.

I don’t want to look without Steven.  I’m afraid, it will once again, be something that I will need to share with him, for support and understanding since we are going through this together, but something he is not ready to take.  I'm not even sure I am ready.

But, I know for a fact, that he isn’t.  He told me.

I asked when he would like to look at pictures.  We couldn’t avoid the ones on the front page of the Marshfield Mail….maybe, after looking, we would have a better understanding of what took place.

The truth is he doesn’t want to know.  He just can’t face it, at least, not until all this is behind him. It's too moving.  It's too emotional.  And, right now, he's keeping his emotions in check.  It's what is getting him through this.

So, as best I could, I summed up my thoughts for my sister to share with those who were willing to “listen”:

 

I’m a talker and I’m wordy.

I always have been.  I remember getting in trouble in elementary for talking too much.  Sometimes I’d have to miss recess.

I talk when I’m happy; sometimes, too loudly.

 I talk when I’m sad; trying to put into words what has burdened my heart.

I talk when I’m angry; trying to find rationalization and understanding when sometimes there is none to be found.

I talk when I’m confused; trying to find clarity.

 Talking too much, and using too many words, is what I do.

Until now.

 Since Steven’s diagnosis, September 5, I have been a little quieter.

 And since finding out what you, as a community, have done for my family and I in this time of complete shock, and fear of the future, I have had NO words.

NONE.

This has never happened to me before.

I don’t know what to say, I don’t know what to do, I don’t know how to process this, and I don’t know how I will ever even begin to let everyone know how eternally grateful I am for the love you have all shown to my family.

Steven, the strongest man I have ever met, only allowed himself a few seconds of weakness when finding out he had leukemia.  However, he has been moved beyond comprehension by the outpouring of love and support.

He never once asked “Why me?” when it came to his diagnosis, but he has asked “Why me?” numerous times when finding out what others have done for him.  And, honestly, we don’t even know a fraction of what has been done.

We couldn’t bear it.  Not all at once.

THERE ARE NO WORDS.

Maybe my words will come back to me when we can have more facts about what we are up against.  Maybe they’ll come back if, God willing, we find that he can be cured.  Maybe they’ll come back when I feel a little stronger and have more clarity in my mind.  But even then, I am not sure, that I will ever find the words to convey the emotion that your love, generosity and selflessness have brought to me, Steven, Lakyn and Blake.

THERE ARE NO WORDS.
 

The L Word (Part 3)


*****

There was talk in the hallway of who Steven would be assigned as a doctor.  My mom spoke up and asked if we could have Dr. Holden.  I had no idea who Dr. Holden was, but in that moment, I didn’t care.  I was relinquishing all authority and was focusing on keeping myself from slipping away.

I couldn’t formulate words without crying, and I couldn’t formulate thoughts without them going to the worst case scenario.  This crippled me and I was broken.

The nurse said she didn’t know if Dr. Holden could just be requested, but the doctor they had in mind, was in the same group with him.  Mom was adamant.  She stated, “He has land that borders ours and my husband is at his place now, doing work for him, we want Dr. Holden.”  The nurses, probably somewhat doubtful, said, “If you have his cell number, then call him.” 

Mom told them that we would.

*****

In the moments alone, I clung to Steven and thoughts of our life together filled my head.  We weren’t done.  We couldn’t be.  We had so much more to do together.

Thoughts of times in my marriage when the day to day irritations had built up, or the moments in the past when I foolishly thought, that if I had to, I could do this life on my own, also filled my head.  My heart was overcome with grief.

I hugged him tightly and he squeezed me tightly. 

Tears streaming down my face I told him how much I loved him and that I was sorry for the times in our 22 years together when that love might not have been as apparent to him as it was in that very moment.

He looked at me and squeezed me and said, “Kim, I know….  Don’t worry about that.  It’s just life…”

*****

I escaped to the hall to regain my composure.  My mom stopped me and was trying to reason with me and help me catch my breath.  A kind man, a nurse’s aid of sorts, with the most penetrating eyes, joined us.  Apparently knowing what we were facing, he came to me, and hugged me, told me to look at him, and told me he was going to pray for Steven.  He told me to look at him, and I did, he looked me squarely in my eyes and said, “I promise you, you WILL have many years with him.  He WILL be at your children’s wedding.”

His eyes were hypnotizing and even while standing and looking at him, my head and heart told me that he was sent by God.  I still believe that.  I’d like to say that alleviated all my fears, and that my faith was strengthened, but I still faltered.  But I did believe God sent him.

I straightened my back, wiped my face and returned to the room to be with Steven.

****

The kids arrived and as soon as the door opened and they saw my face, swollen and red with tears, I could tell their posture became guarded.

I told them that we had found out that daddy was sick.

Blake, almost visibly retreating into himself, in a panicked voice said, “Is it bad?”

I nodded that it was bad, but told him that we had no reason to believe that he wouldn’t get better.

Blake, always my thinker, asked what exactly his daddy had.  I told him leukemia.

“That’s CANCER!”  he exclaimed.

How my nine year old knew what leukemia was is beyond me, but not surprising.  Lakyn’s color left her face.  As I know mine did as well.

“Is he going to die?” the note in his voice made me know that my job, in his eyes, was to tell him that he wasn’t going to.  But, I had to be honest.  I didn’t know.

I told him that I hoped and prayed that he wouldn’t, and that, after speaking with others, there seemed to be options to keep him here with us, but that life held no guarantees. 

He nodded and said, “Daddy’s tough!”

Everyone in the room silently nodded and Steven tucked his head.

*****

Beth, Jason’s aunt, showed up right as Dr. Holden came into the room that evening.  She and Sarah took that moment to take the kids to see a helicopter that had landed. 

Dr. Holden told us that he did, as we now knew, have leukemia, and that most likely it was AML, the adult kind, based on his age.  We wouldn’t know for sure until the blood test came back in a couple of days.  Childhood leukemia was considered “good prognostic” and adult leukemia was “bad prognostic”.  He also explained that there were upwards of 14 subtypes now, of AML, and we wouldn’t know what type for 10-14 days, when the bone marrow test returned.  Steven, wouldn't be going anywhere, for a month.

I looked at the doctor, and while barely able to speak, somehow managed to ask, “Will this take my husband from me?”  I noticed the same tone in my voice, which I had heard in Blake’s earlier, willing this doctor to tell me good news.

“I can’t tell you that.  I don’t know.”

I believe there was more conversation between the doctor and my dad, who had came up with Sarah, Jason and the kids, but I don’t know what it was. 

My head was roaring, and I was struggling to breathe.

Sometimes I still do.

*****

The kids came back with Sarah and Beth and were super excited.  They had not only got to see the helicopter, but because it was grounded on its trip back to Clinton due to weather, they were able to get inside it and look around. 

It was good to see them acting like kids, but I felt like it was all but impossible to act like a mom.  Sarah said I was doing better than I thought, but I remember pulling her aside and telling her that I couldn’t keep up the front.  I couldn’t act positive, not when I felt anything but.

She told me I could.

My mom called my doctor and had him prescribe me some meds.  Xanax.

I think mom was the more realistic of the two, but I somehow managed to keep from falling completely apart when my kids were present.

However, when two of my best friends, Amanda and Stacy, showed up outside Steven’s room with a basket full of things for me, the kids, and Steven, I couldn’t keep it in anymore. 

*****

That night, Sarah stayed with me at the hospital.  Before leaving, Amanda and Stacy, and Sarah, had made me leave the hospital for a while to get clothes to sleep in at Target.  I remember people looking at me, and knowing I must look like something out of a horror movie.

My cousin, Julie, met Sarah and I as we returned to the hospital.  She stayed with us for three hours as I tried to wrap my head around my future.  I remember Sarah being so positive and optimistic and looking at her and me calling her out on it.

I knew that she loved him nearly as much as I did, having not ever remembered life before Steven, and I knew that she was hurting almost as much as I did.  I told her she needed to stop acting like she wasn’t worried and be honest with me and herself. 

She then shed some tears of her own.

I honestly can’t remember anything but crying, and recalling how a few years ago there had been a marrow drive at our church for someone with leukemia and how I thought, “I need to go” but worried about the ramifications if I was to be a match. 

That’s how mind works.  Worry, and anxiety, about the unknown, but my conscience wouldn’t let me use fear as a reason to opt out.  However, when the time came, and I found myself realizing I had completely missed the drive, I felt relieved.

The lady later died.

The guilt I felt in that moment was overwhelming.  I deserved Steven’s fate.  Steven didn’t.  My kids deserved their father, I didn’t deserve him.

God had gotten this all wrong.

*****

Sarah stayed the night with me the first night.  We slept, spooning, in the hospital bed next to Steven’s.  I think our spooning gained a few looks, but when we tried to explain it, and that we were sisters, to the number of nurses entering the room, the majority would just nod and say, “not judging”.

I’m not sure they believed us.

I didn’t really sleep that night, but exhaustion took its toll.  That morning we woke as they wheeled in to take him to get his port for chemo.  As they left the room with him, and there were no kids to see, and I wouldn’t appear weak in front of Steven, I cried openly and freely. 

When I finally got it under control, I turned on the TV for some type of distraction. 

Any type of distraction. 

The Today Show was on, promoting a story coming up.  On the screen flashed a bald headed beautiful girl as the off screen voice said, “….fighting for her life against leukemia…” and all control I had summoned escaped my grasp again.

****

Mom showed up with meds, and I was thankful to have them.  I wanted someone to knock me out and wake me up when this was all over.  I was letting my entire family down by not being able to get a grip.

I wanted to die.  I wanted Steven to live.  I wanted our old life back. 
 
I realize that this is not rational, or an acceptable train of thought.  But that's what it was.  I wasn't rational.

I wanted to be anywhere but on the cancer floor of Mercy hospital.
 
Everything was a blur.  Probably thanks to mom's special delivery.

I remember a shower.  I remember Angela and her mom showing up and me going out in the hallway to fall apart again. 

I remember her mom praying over me.

I remember Deanie and Linda and the tears Deanie didn’t think I saw when he looked at me, and I remember Linda's strong hug and her encouraging words.

I remember my aunt Peggy, and Julie, coming to the hall where I was, and joining the others as they gathered around and tried to get me to get it together enough to give Steven the support he needed.

Peggy just held me and I could feel her helplessness.

 I felt like such a failure. 

Here I was, surrounded by family and friends, and they were worrying about me, when everyone should be solely worried about, and focusing on, Steven.

I felt like such a failure.

I was failing my family when they needed me the most.

(Part 4)