Monday, January 26, 2015

Anything is possible

Last week we saw Steven's doctor for the first time since she shook us to the core with the declaration that Steven still had "circulating blasts".  As I had earlier written, we have since found out that the blasts were NOT cancer, and as of today, he is cancer free. 

However, every time we have seen his doctor we have been met with bad news.  We had never once saw her and received encouragement.  That alone always left me physically ill before each visit, wondering what we would learn that time.

Last week, however, the tide had changed.  Steven had already made up his mind beforehand that he was going to start his campaign to go home.  He knew that he was supposed to stay 100 days post transplant (mid March), but he is also stubborn and was going to question what his BMT physician could do here, in St. Louis, that Dr. Holden couldn't do back home. 

When the doctor came through the door and looked at Steven and said, "You are doing really good", Steven began making his argument to convince her to let him leave, while I tried to pick myself up off the floor. 

History had been made.  Her positivity was unprecedented, and as a result, it was also contagious.

*****

During this time I have never felt more like myself...and yet, less like myself, than ever before.  It's odd, really.

I have found that, with the exception of Steven, I still have the need to fill silence with conversation. I want people to be comfortable around me, even when I am not comfortable inside me. I want to be "up", and social, and relatable.  I want to be whoever I am needed to be by others.

The problem?  Just the thought of being "normal" again, and doing "normal" things, brings me so much anxiety.  So much has happened since the last time I was "normal".  I wish that when Steven and I return home that we could just step back into our lives, and hit "resume" and pick up where we left off.  But we can't.  And as much as I want to, I know I will be incapable of it.  This journey has forever changed the story of who we are.  I don't know that we are necessarily better, or worse, just different.  

I feel like everything in our lives will now be divided up into two sections: "before leukemia" and "after leukemia". 

I know my kids have changed and I am sure that their lives, too, will be divided.  They've experienced many things that I was not there to share with them.  I know that there will probably be many times that they say to me, "Remember when?" only to realize that it wasn't with me that the moment was shared. I know they've grown, and I know they have formed an even stronger bond with Sarah and Jason, one that can only be formed by being fully integrated into their family, and it is a bond that will last a lifetime.  I know that strengthening that bond doesn't weaken our own bond, but I would be lying if I didn't admit that I wish it had never been strengthened this way. 

I pray that when we get home that getting back to normal is easy for them.

*****

During the two weeks we were home at Thanksgiving, just going into the grocery store would have me experiencing the first stages of an anxiety attack; my heart would start racing and my palms would start sweating.  I would also notice that my breathing was labored and I just wanted to cry.  Still, because I just wanted to be "me", I think I did a great job of acting like normal.  It was just inside that the turmoil was raging.

And, honestly, I don't know why.

I do know that I first shared this blog publicly because I intended to keep people updated on what Steven was facing, and what the road ahead looked like for both of us.  I thought that it would primarily be doctor's reports, treatments, timelines, etc.  However, I found that when I would sit down to type those things, something entirely different came out.

I have opened up a large part of myself on this blog, and, honestly, that part doesn't bother me.  I've said before that I am an "open book" and that if you wanted "the dirt" on me, really, all you had to do was ask. 

What does bother me is that I sometimes feel that I have somehow, inadvertently, made myself to look better than I am, or have painted myself in a better light. When I see comments that praise me, or thank me, or tell me how strong I am, it really makes me uncomfortable.  It is at those times that I wish I could pull them aside and tell them, "Seriously?  Listen to what I just did yesterday..."

I am so very flawed and I make mistakes daily.  Multiple times.

And my faith?  So very human.

I can honestly say that during this time my faith in God hasn't wavered, but my faith that my prayers will be answered the way I want them to, has.  And the fear of what it means if they aren't answered "my way", paralyzes me. 

In one moment I am strong and shouting to the mountains, but in the next I am weak, and in the fetal position crying to myself, or my husband.  And I feel guilty for this.  I feel as if, somehow, I haven't explained well enough how my faith is so very, very human.  It isn't something to admire.  It isn't something to try and emulate.  It isn't something uncommon.  It is just something that I try and cling to, knowing that really, it is ALL I have.

*****

I have shared that I have prayed for many signs during this journey.  It seems as if once I get my sign, I need yet another one.  My mind needs constant reassuring and faith isn't something in which you can be 100% totally assured.  It wouldn't be faith if it could.  I have often wondered when will God say, "Enough!" 

During these times I find myself thinking about Peter and the time when he walked on the water.  I've heard the story since I was a kid, but really thinking about it, and finding similarities in our personalities has helped to open my eyes to the understanding heart of God.

Peter knew Jesus.  Like...really, knew Jesus.  He had seen firsthand the miracle Jesus had just performed-feeding the multitude.  He had spent time in person with Jesus. 

He knew him.

Yet.

Yet...when in a boat, in a raging sea, Peter questions if he is really seeing his Lord.  What does he do?  He asks for a sign. He asks for Jesus to tell him to come to him on the water...

And so Jesus does. 

Jesus gives Peter his sign.  But, like me, once Peter gets it, he gets nervous again.  He starts looking at the waves and the storm and fails to realize the miracle he is smack dab in the middle of, and starts to sink.

And, again, Peter finds himself reaching for Jesus.

And the storm calms. 

The literal, and figurative.

Surely, if Peter, face to face with Jesus needed signs... 

Surely, if Peter, face to face with Jesus also was sucked down into the fear...

Surely, if Peter, who denied Jesus three times, still had the heart of Jesus, and never heard the word, "Enough!", then I have to believe that he can understand a very flawed, very human, heart like mine.

He understands all our flawed, human hearts.

*****

So,  "When do you think I can go home?" 

Steven's question hadn't missed a beat.  He did not let grass grow under his feet from the time she complimented his progress to the time that he wanted to know the plan of action.

She smiled.  She reminded him that he had just been through a very "intense and complicated" procedure.  She reminded him that he still had a rash, which was Graft VS Host disease.  She reminded him that he had a cough and with his suppressed immune system, things could go south quickly.

But then she reminded herself that he was "doing really well".

She told Steven that he would probably be home in a month.  Although Steven was disappointed, he knew that a month longer was still a month sooner than expected. He nodded.

Apparently encouraged by all the positivity, I took a step of faith and said to Steven, "Maybe, (I knew she was listening as I held his eyes) if your rash clears up and your cough improves, she will reevaluate and possibly let you go in two weeks, instead of a month."

As she picked up her files and readied herself to leave the room, she smiled and said, "It's possible."

In that moment I had been infected by her newfound positivity and couldn't help but think...."aren't all things?"

"Jesus said unto him, If thou canst believe, all things are possible to him that believeth." - Mark 9:23




 










Monday, January 19, 2015

The Biggest Blessing

We found out last week that Jammie's cells are 100% engraphed in Steven's marrow.  We also found that his marrow is still free of the cancer and the cytogenic mutation.  Both of these are the results we have been praying for.  Fervently.

Although this in itself does not guarantee that Steven will be cured, they are critical pieces of the puzzle.  Without these pieces, we would never even have the chance to see the work completed.

We also received the sign we had prayed for: the rash.  A rash had been said to be a good indicator that the new cells would recognize the cancer when/if it returned.  It showed that Jammie's cells were active, working and recognizing that something, was indeed, foreign.

 In fact, despite Steven's assurance that we haven't, I think we might have prayed too hard.  It has been present for over a week and is not showing any sign of clearing up.  In fact, it's spreading.  Even raging as it is, I hope that it is still a good sign, and that Jammie's cells make themselves at home.  Soon.

Despite the great news, I have found that I continue to worry about Steven, the kids, and what our future looks like.  It is ridiculous, really.  I know this.

It's common knowledge, after all, that no one can predict what the future holds.  Still...we try.

*****

The anxiety leading up to the results, despite my attempts to ward it off, became almost debilitating.  Despite having friends that were with me when I discussed the possibility of the cancer still being present with Steven's nurse, I felt myself starting to shut down and succumb to the fear.  In my car, in a parking lot, I cried as I shared with them my greatest fears relating to Steven and this horrible disease.

When they left that night, I clung to Steven.  For the first time in months, I broke down in front of him and he tried to comfort me

I clung to prayer and searched for God in all things, unable to question His inevitable presence in so many of the blessings we have experienced.   I turned my mind to the people who have continuously reached out to Steven and I and lifted us up with prayers and kindness.  I turned my mind to the generosity of so many, and the opportunities it has provided.  I turned my mind to the hands that have comforted my children and watched closely as they have grown, physically, and emotionally, as I have been away.   And, as I have done innumerable times during this journey, I said the rosary as a way to calm my mind.

*****

The day we got the good results was the last day that I held the beads in my hands, noting the feel of each and I went through the prayers.

As I went to retrieve them this week, wanting to again, calm my mind, I found them missing.  Gone.

I searched the house and turned things inside out.  They were no where to be found.

This duplex is not large, and there are limited hands that would have been here to touch them.  Yet, they were gone.

Unexpectedly, the loss I felt at their disappearance was pronounced.  I had never been a big "sayer" of the rosary.  Funerals and special masses were about the only times I said the prayers.  However, beginning with Steven's first hospitalization in St. Louis, I began to say them more and more frequently.  I was not by any means an expert and, in fact, had to download an app to help me know which "mysteries" were said when.  It's true what they say about "Cradle Catholics" in my case.  Many of the very traditions that are held in high esteem by the church had been taken for granted by me, instead of taken to heart.  

Steven's situation changed that. 

With my busy mind, and inability to just be still, the rosary seemed to be the cure.  It moved my hands, and my mind...and most importantly, my heart.

*****

Unfortunately, the rosary has still not been found. 

Fortunately,  the rosary has not been the only thing to move my heart.

Far from it.

The past few days I have been trying to formulate the words, or the method, to adequately convey how I feel about the outpouring of love that has been shown to my family during this time.  Time and time again I think about personally making phone calls, sending messages on Facebook, or a card through the mail, something, anything, to thank everyone for the things they have done-the countless things that have been done.

The only thing holding me back?  The intense fear of forgetting someone.

It's true. 

Steven and I can not even begin to comprehend the kindness that has been shown to us during this time.  It's humbling.  It's heartwarming, and at the same time, heartbreaking.  It's overwhelming and words seem to understate the importance.  It has changed me.  It has changed Steven.  It has changed my kids.

I remember crying in the parking lot of Mercy hospital in September, as I spoke to my sister on the phone.  Through the sobs I choked out my concern, "I am SO afraid this will change my children...so afraid it will change WHO they are.

Without missing a beat, Sarah replied, "It will". 

And she was right.

At the time we agreed that our biggest hope was that this disease, and the subsequent journey, would change them for the better. 

And it has.

As a parent it is humbling to admit it.  My children, who I have spent years shaping, have changed, without me, in a matter of months.  In my absence they have grown, they have matured, they have adapted, and their eyes have forever been opened to the importance of community.  This change has had nothing to do with me, and everything to do with you, and the love that has been shown.

They have seen the impact that your prayers have had in our life.  They have seen, firsthand, the outpouring of love at the benefit, NINE days after Steven's diagnosis.  They have seen my parents hand deliver card after card from people reaching out to us, showing us their concern and love.  They have seen people shove money in our hands, refusing to have it returned, because they wanted to "do something". They have seen people travel hours to come show us they care.  They have overheard the phone calls expressing concern.  They have seen a man at the church we have been attending here in St. Louis, a stranger to us, give Steven his name and number, "just in case" we needed someone here...while we were far away from home and family.

They have seen, in a way never seen before, the way that God works through His people on earth. 

And it has changed them. 

It has changed us all.

Although I may never be able to personally thank everyone for all they have done, please know it hasn't gone unnoticed.  No matter how large, or how small, it has made an impact. 

And, as my children grow, please know that they, too, will share the blessings that they have witnessed, or experienced first hand.  Your generosity has crossed generations and has shaped the lives of those who are just learning what it truly means to live.

As I said, my children have been changed.

We all have.


Sunday, January 04, 2015

"Working" it out

Around the time I was 16, or 17, I went through confirmation at church.  As most in my confirmation class probably did, I was doing what I had to do...and going through the motions.  (Maybe that was just me...) I didn't dwell too deeply on the steps I took, or the process itself.  I just did it. We all did.

I remember that I chose St. Martha as my confirmation name.  It was an easy choice because my sponsor's name was Martha.  It seemed fitting.

Lately many things I have read have centered around St. Martha and I am only now realizing just how fitting it was...and still is.

You see, my mind is a very slippery slope.  I have already confessed to worrying about NOT worrying, but, sadly, I also have to constantly be doing something and, unfortunately, worrying counts as something.  Many times I even have to do TWO "somethings". 

For example:  I can't just watch TV. I have to watch TV and also read, or scan Facebook, or jump up and do another load of laundry, or dust that shelf that I just noticed had dust on it, or....you get the picture.  My mind also consists of a laundry list of tasks to "check off" before I give myself permission to relax.  Each day I have an "order of events" of sorts, that allows me to effectively use up any "down time" I might encounter.

Yeah.  Mentally and physically I am always checking things off of lists. And, as you might imagine, there is rarely any "down time".

Since Steven's diagnosis I had categorized his treatment into three parts, never letting my mind actually wrap itself around what happened after the "third part".

Part One:  Round one of chemo in Springfield.
Part Two: Second round of chemo
Part Three:  Transplant

And now here we are.  The third part has been completed. 

The "Martha" in me has been busy up until now.  I've had a very real list of jobs to accomplish and at the very top of that list was making sure that Steven had everything he needed, whenever he needed it, and giving him "encouragement" that I know (at times) he didn't want. 

However, now we are no longer in the hospital and each day he is stronger and stronger.  Waiting on him hand and foot is no longer needed or wanted, and my "jobs", are dwindling.  Unlike being in your own home, here, in this rented duplex, there are very few things that have to be done daily.  With only two people there is very little laundry, and even less mess.  There are no toys left out, and no homework to help with.  There are no kids to listen to, and no one to argue with about what I am fixing for supper.

The "Martha" in me is scampering around trying to find work; to be busy and, at the same time, be helpful.  When the (two) dishes have been washed, and the (one load of) laundry has been put up, I have found myself filling up the time with worry.  And anxiety.  And fear.  And tears.

You see.  The "work" part of Steven's treatment has been completed.  Now it is time to wait.  It is time to be still.  It is time to be patient. 

And I am not good at any of those.

*****

She (Martha) had a sister called Mary, who sat at the Lord’s feet listening to what he said. But Martha was distracted by all the preparations that had to be made. She came to him and asked, “Lord, don’t you care that my sister has left me to do the work by myself? Tell her to help me!” “Martha, Martha,” the Lord answered, “you are worried and upset about many things, but only one thing is needed. Mary has chosen what is better, and it will not be taken away from her.”
—Luke 10:39–42

*****

I believe that, like most things, it is probably not coincidental that the story of Martha and her sister have been reappearing in the things I have read this week. 

I feel the need to stress that I am not someone who immerses themselves daily in all things Biblical, and holy, or Catholic-for that matter. I am just an ordinary person who is sometimes weak, who sometimes gets angry, who is sometimes selfish, and who is sometimes spiteful.  I am also someone who realizes that without God, I would never be anything but those things.

And although I am by no means an authority on God, or how He works, I am someone that believes -right or wrong- that God meets you where you are.  I think that is probably one of the biggest blessings God gives us. He doesn't wait for you to get it "all right", or for you to have your laundry list of  self-improvements checked off.  He comes to you as you are.

This week, He has came to me in many ways.  And the recurring theme of His message to me was the same message that he told Martha: "you are worried and upset about many things, but only one thing is needed."  I need to continually remind myself that all I am called to do is to sit at the Lord's feet and listen to what He says.

I am called to wait.  To be still.  To be patient. 

*****

Many have inquired when we will know if the transplant "worked".  Well, you see, that is another reason I have got to learn to quiet my mind, and quiet the worry and the "work" it creates, and just listen to God.

We will know, as soon as the end of the week, whether or not Jammie's cells are now taking over Steven's bone marrow.  It would even be possible, AND WONDERFUL, if Steven's marrow was populated by 100% of Jammie's cells.  The biopsy checking the progress of the engraphment will be Tuesday and we should know the results by Thursday or Friday. 

However, even if the cells are 100% Jammie's, this is not, in itself, a guaranteed cure.  Granted, it has to happen for a cure to even be possible, but the test will be if Jammie's cells recognize the cancer, and effectively get rid of it, when it returns.  Of course, we have no idea when this will be.  Or if it will ever be.  It is for this reason that I pray for a rash.  Doctors have made a correlation between the new cells fighting the body enough to cause a rash, and the new cells fighting the cancer.  We don't want the new cells to fight too much, because they could, literally, fight Steven's body to death.  We just want them to be irritated...and it to be visible in a rash.  However, it is worth noting that there have been cases where the recipient did NOT get a rash and the donor cells still did their job, fighting off the cancer.  As you all know, I have a tendency to want signsThis time is no different.

There is a part of me that believes that God could have already cured Steven and the transplant was purely a way to strengthen the bond between Jammie's family and our own.

Sadly, in the back of my mind, there is also the knowledge that there were people on the Stem Cell Transplantation Unit that were undergoing their second transplant after the first one did not succeed in defeating the cancer.  Some were cancer free for a year before the transplant "no longer worked". 

There are just really no guarantees.

Each day, week, month, or year that goes by that Steven is cancer free is a gift.  My mind needs, but will never have, the guarantee that the leukemia won't return.  Of course, none of us have the guarantee that we won't be diagnosed with cancer tomorrow.  In life, there are no guarantees.  Just the illusion of them.

Please pray for Steven, and a long term cure.  And, if you will, a rash.