Wednesday, November 19, 2014

Blues and Blessings

I've been described in the past, and as recently as this past week, as an "up" person.

I think it's safe to say that each person has their own definition as what that means to them.  To me, when I think about someone that is "up", I think about someone who is happy, outgoing, infectious, and contagious in their joyfulness.

Admittedly, that isn't me.

In truth, I try to be "up" when I am in the presence of others.  I have done this my whole life.  I may talk about the things that bother me, and I have always described myself as an open book.  However, it seems without fail, I try to add a dash of humor to the situation at hand just before the tone of the conversation becomes too serious and the anxieties too close to the surface, leaving bystanders all too close to being in that uncomfortable position of not knowing what to say, or how to react. 

People feel safe with humor...but tears are often very uncomfortable for them.

I don't like making people feel uncomfortable.

I have always spoke openly about my struggles, my worries, and my (sometimes debilitating) anxieties, but it is rare that you will ever see them first hand.  I work very hard keeping them visibly out of sight, and kept in check.

I think that effort has started to catch up to me.

After Steven was first diagnosed I was unable to keep anything inside.  I was a mess.  I could not see ME making it through this journey.  I felt guilty that I wasn't immediately rising to meet the challenge and showing my kids positivity and strength.  But, even the guilt was not enough of a motivator to keep me "up".

Eventually, the initial shock wore off with the help of meds, and the constant stream of friends and family through the doors of his hospital room at Mercy.  Those things motivated me to once again, rein in the worry, put on my public persona, and make this difficult time easier for them.  I knew, if I were in their shoes, how much harder it would be to come in to see your friend that had been diagnosed with a life-threatening disease while his wife sobbed in the background.

They didn't need to see that and Steven didn't need to see that.  I would have brought everybody down.  Truthfully, it was probably a great motivator for me to keep it together and to push on.

*****

When we were surprisingly kept in St. Louis at the beginning of October, the shock that had previously wore off was back in full force.  The same fear reared it's ugly head and the timelines I had so strategically placed in my head were relevant no more.  For four days I found myself "down"...very far down, and the complete opposite of "up".

After adjusting to the new normal that was St. Louis and finding hope wherever it chose to meet me, I was able to once again, find the part of me that was "up"...even if it was only in small doses.

There were times that the tears would threaten to come and I would force them back down.  There were times that, when alone, I would let them fall.  But for the most part, I kept them, and myself, in check. 

*****

During the past two and half months, the anxieties have never kept me from seeing the blessings that we have received.  I have never, not even once, been blind to those.

I appreciate each and every one and am brought to my knees by the generosity of so very many.

However, even with the knowledge of the blessings, I sometimes still get the blues

Even with the knowledge of the blessings, I still feel the weight of the situation

Even with the knowledge of the blessings, I still want to cry and curl up in bed

Even with the knowledge of the blessings, I sometimes want to throw a tantrum like a toddler until someone hears my screams and gives me my old life back.

Even with the knowledge of the blessings....sometimes it's really hard to be "up".

No one, not even those closest to you, really want to hear about your biggest fear, or to talk about the "what ifs".  Sometimes they even scold you, believing you to be blind to all the good that surrounds you.  But, deep down, I know that it isn't that they don't care, or they think I am taking all the goodness for granted, it's that they too, don't want to let their minds go to that place.

And so, at the end of the day, you fall into bed, exhausted from the effort of it all and thankful that you finally don't have to be "up". 

(This is not written to garner sympathy.  It is only because I wish to share what I have only recently began to understand.  I, too, have told people "you are so strong" and have been blind to all the effort it has taken to give what sometimes is only an illusion of strength.  Now, in the midst of my current situation, it seems so obvious that the "strength" that people show is often more for the benefit of others than it is to the benefit of them.)

Sunday, November 16, 2014

Thanksgiving

It seems like so much time has passed since I have written anything about our journey. 

We were brought to tears of joy and thankfulness when the bone marrow biopsy came back showing that the marrow was still "blank" from the last round of chemo.  This was the explanation we needed as to why Steven's counts were slow to recover.  The fear of  the cancer already rebounding, therefore leaving the odds stacked against him, was always looming in the background.  It was the fear that I struggled to keep in check.  It was the fear that stole my peace of mind.

It is also the fear that drove me to prayer, time and time again. 

Based on the rounding oncologists remarks, Steven's odds of cure are greater with transplant since the last round of chemo was successful.  Considering that he was initially given 50% chance of beating this, this means that the odds are NOW in his favor.

My money is on Steven.

As I said in my very first blog post about this journey, he is the toughest guy I know.  The strength of this man is unimaginable.  Yes, he is physically strong.  I have always been amazed at the things that he is able to push his body to do, but his mental strength is equally as strong.  Ask anyone who knows us.  They will tell you the same.  Steven is solid as a rock....and, well, I'm a little less stable.  He is everything I am not, and everything I would like to be.

*****

Steven has always believed in God.  That much I know.  But it was in a hospital room, that the strength of Steven once again showed itself.  This time in the form of prayer.

As we said goodnight, and I prepared to move to the opposite side of the room, to lie by myself in the hospital bed reserved for me, I told Steven I wanted to pray with him. 

Together.

In the past we would pray aloud before meals, or with the kids before bed, but our own personal prayers were said in silence. 

Admittedly, the moment felt extremely intimate...and to be honest, a bit awkward.  This man who I had shared 22 years of my life with knows everything about me.  He knows what is on my heart, and he most certainly knows what I would pray for, especially at a time like this.  But, for some reason, doing it aloud, praying to our Creator, seemed to be the highest form of vulnerability that I had ever shown to Steven.

And, truthfully, I do not know why.

I know that Steven felt the same way too.  He had been prayed for, and prayed over, multiple times.  He never once shied away from that, or was unreceptive.  He needs the prayers and wants the prayers, and he admires those who offer them.  However, when I finished my prayer and looked at Steven, urging him to begin his own, I saw the same look in his eyes that I knew I must have had in mine. 

Uncertainty.

"I'm not sure that my prayers sound very good.  I'll just say them in silence."  His words voiced my own thoughts about my own prayers.  I urged him on, and wasn't too proud to use guilt to get him to comply with my request.  "I said mine...you HAVE to say yours."

I called to mind the verse:

 "For where two or three gather in my name, there am I with them.” ~ Matthew 18:20 

I recited the verse to Steven and told him that I had no doubt that God was with us even if we prayed in silence, on our own, but that if there was a chance that he and I, hands folded together in prayer, could enhance our prayer experience, then we would be cheating ourselves by praying alone.

And so he began.

As he said "amen" the differences in our prayers struck me immediately.  And I told him so.

When I prayed I spent the majority of my prayer asking God for things.  I asked God to first, and foremost, to heal my husband, to watch over my kids, and to strengthen their faith during this most difficult time.

Steven thanked God.

Numerous times.

And there, in our prayer, the differences in our personalities showed itself again.  I was the needy one....Steven was the strong one. 

And, once again, he was everything I wanted to be. 

Don't get me wrong.  I am thankful.  And I tell God that I am.

But...generally I tell Him what I want first.  The "thanks" is often after a long list of "needs" that I have addressed.  Steven stated that he generally prayed everyday at work, in his truck, before he ate his lunch, and that the prayer was generally the same.  Prayers of thanks and prayers for me and his kids.

Maybe THAT is where Steven gets his strength.  It seems to me that it, most likely, is a God given gift to someone who remembers, at all times, to say "thanks".  Maybe I need to take note.

******

Honestly, I am not sure that there is a point to this post.  I am also not sure what drove me to write this.  It isn't what I sat down intending to write.  I thought it would be more of an update as to where we are in the process, or what our few days at home has meant to us.  This post almost seems too personal to share, but at the same time, I feel compelled to go ahead and hit "publish". 

I would be lying to say that we have joined hands and prayed aloud, together, every night since that night.  We haven't.  But we don't always say them in silence either.  I think we are growing...and hopefully it is in the right direction.

Generally I ask for you to pray for Steven and our family, and, of course, I ALWAYS welcome those prayers on our behalf.   However, I ask that you also say a prayer to God thanking Him for all the blessings in your life.  Regardless of how bleak things look, there is always something to be thankful for.


Monday, November 03, 2014

Fear and Faith

Four weeks ago today we headed to St. Louis for a doctor's appointment.  The rest is history, so to speak.

We have been finished with chemo since October 13th, the rest of our time has been spent just waiting for his cell counts to recover.  We played the same waiting game in Springfield, after our first round of chemo.  Right at the four week mark, on a Friday, we were able to go home.

For three days. 

At that time we knew the counts had been slow coming up, but no one acted alarmed.  In fact, for some patients they claimed it was normal.

However, the doctors office visit the following Tuesday clued us in that Steven's counts were slow recovering, and still low, due to the fact that the cancer, less than a month after chemo, had already returned. 

This, obviously, wasn't a good thing.

Because of the aggressiveness of the cancer, we were then admitted to Barnes, and started another, stronger, round of chemo.  We were told that Steven's overall odds went up if this round of chemo worked.  We have been praying for this.

And waiting.

The initial time frame given for count recovery was 21-26 days.  Today is day 26.

Yesterday they had to give him more blood because his counts had dropped below his parameters.  When looking at his count chart on the wall, I noticed that it was his red blood count that had fallen below the line.  It was his red blood cells that had initially alerted the doctors in Springfield that something was wrong.  It was also, most likely, the reason Steven felt short of breath...the cause of our trip to the ER in the first place.

These factors has me playing out a lot of "what ifs" in my mind.

After speaking to the doctor this morning, I know that sometimes it takes 5-6 weeks for counts to recover.  I also know that if they haven't recovered by the end of the week, they will do another bone marrow to make sure that it isn't the presence of cancer that is causing this.

Again...more "what ifs".

Please pray that Steven's counts start to recover.  I am frightened of the thought of him going into the transplant process without the best odds possible in his favor.  He deserves the best odds possible, however many people deserve things that they never get. Sometimes that works in our favor...and sometimes it doesn't.

There are times that it really stinks that life isn't fair.  Sometimes it's a blessing that it isn't.

Please pray for us. 

*****

This past week Steven insisted that I go home to take the kids trick or treating.  "They're still little..." he said.  And he's right.  They are.  They are little kids who have had do deal with some very adult things.

And they have done very well with the cards they have been dealt, although Blake is struggling a bit.  He has started to cry almost every night during our phone calls and has also started having panic attacks again.

This is something that we have struggled with in the past, but we had all but overcame it.

Unfortunately, with our current situation, they have returned.  Although, to an adult, the fears that he gives voice to seem silly and unfounded, to him they are very real.  As is the panic.

My heart is broken as I hear him cry and know that worry is consuming him.  Although presenting itself in various manners- fear of the bath water scalding him to death (he read on a water heater that it was possible), fear of having his tonsils out (which has never even been mentioned), fear of his heart "giving out on him" (and complaining of pain in his chest), fear of something being terribly wrong because he is having more nosebleeds (Steven has been having nosebleeds) - I am certain the worry is centered around his daddy. 

I know this because there are times it consumes me too.  Although I can give him scientific evidence that he isn't scalded, or doesn't need a tonsillectomy, I can not take the worry about his daddy away from him. 

I know, though, that children are resilient and there are times that Blake acts as carefree as any other child his age. And I am thankful for that.  In fact, Halloween night he played just as hard, and enjoyed the candy just as much, as he ever had.



But then, out of the blue, the worry creeps back up again.

Sitting in church Sunday morning, listening to a homily about All Souls Day, the priest spoke about death, and what it meant to us as Christians.  Although the homily was meant to give hope, Blake couldn't get past the reference of two significant deaths that had occurred in the priests life, both lives taken by cancer.

There, in a pew at the St. Louis Cathedral Basilica, Blake started to cry.  I wanted to cry too.

Instead, I took Blake out to the foyer and downstairs, where I asked him a question I already knew the answer to.  "Are your tears because you are worried about Daddy?"  He nodded and buried his head in my side.  I told Blake that maybe it would be a good time for him to say a prayer asking God to watch over, and heal, his daddy.  I explained that everything was in God's hands.

I think this both comforted and scared him. 

I understand this.

It comforts, and scares me too.

What if God decides NOT to heal Steven. 

Where would we go from there?

Please pray that we never find out.