Wednesday, November 25, 2015

Impossibly prepared

Today Steven and I are "celebrating" our 15th wedding anniversary.  (Of course, it took me eight years to get him to the altar.)  Our celebrating looks a lot like a normal, lazy day at home, which for us, these days, is anything but normal.

The morning started the same.  Steven and I were both awake and yet dreading the climb out of bed.  I looked over at him and said, "Happy Anniversary".  He repeated the same to me.  He then said, "I am so glad I married you..."  We then talked about the years that had long passed us by and all the ups and downs we had experienced.  He stated that he knew no marriage was perfect but that he felt ours was pretty good.  

That's always good to hear, because, well, life and marriage isn't always easy.

We talked about all the growing up we had done together (I was 16 when we started dating and he was 19), and how much we had aged.  I laughed and told him if he left me now, after all we had been through, for some younger woman, I wasn't going to be too happy.

It felt good to laugh.

I haven't been doing much of that lately.

I'm a planner and I like to feel like I know what is ahead of me.  The past 14 months has shown me that I will never know exactly what lies ahead.  In a way, almost as a defense mechanism, I'm setting myself up, mentally, for the transplant to fail.  I think about all the implications if the cancer comes back.  I try to work out a plan as to how I will manage and, somehow, survive.  Not surprisingly, I am desperately sad most of the time.  

I know this isn't who God has called me to be.  He has given us hope in the bleakest of circumstances.  He has provided for us in ways we could never forsee.  He has gotten us this far.

I owe Him more than spending my days waiting for the ball to drop.  I'm finding myself in the mental fetal position much like I was last time I updated my blog over a month ago.  Maybe that's why I haven't written. I have failed to take my own advice to find a way to look outside myself and my situation...

*****

I have a rosary app that I listen to frequently. When reflecting on one of the mysteries of the rosary the narrator mentions Mary's encounter with Simeon in the temple when Jesus was brought to be presented.

Simeon tells Mary, “This child is destined for the falling and the rising of many in Israel, and to be a sign that will be opposed so that the inner thoughts of many may be revealed – and a sword will pierce your own soul, too.” (Luke 2:34-35) 

Lately I have found myself wondering about Mary and the weight she must have carried in her heart.  I am no Bible scholar, so I can not claim with any certainty to know how much, or how little, Mary knew about her child's future. I    can't recall ever hearing that Mary knew the fate that Jesus had ahead, although she most likely knew His road would be filled with bumps.  However, hearing that "a sword would pierce her own soul" probably left her with a less than peaceful feeling about the future and what it held.

Still Mary nurtured and loved her son.  She supported Him and suffered with Him.  She didn't mentally distance herself from Him in an effort to lessen the blow when it came...  

I am sure she knew that there was NO humanly possible way to lessen the blow.

No one has told me that my future is filled with pain and trying to mentally prepare myself for one that is would be futile.  There is no preparing for the worst IF it is to come.  No amount of worrying will change the situation.   But PRAYER can change the situation and change me.  I am asking for your prayers. 

I need to be changed.  

*****

Steven feels much better than he has in months.  He has an appetite, and the 80 mg of prednisone he takes a day is no doubt helping with that.  His liver enzymes are decreasing and his levels are all coming down - which is good.  We should be able to start tapering the prednisone as soon as Friday.

I am continuing to give him IV infusions at home and that seems to be going well.  The home health nurse comes and draws labs when we aren't going to St Louis or Springfield for them.

Steven's platelets have been decreasing for almost two weeks.  I looked back on Facebook to see what was going on at this point after his first transplant.  (That alone can be a slippery slope.)  At around this point last time he also had a drop in his platelet numbers.  There are many things that can cause this, and relapse is one, however the list of other possibilities is long and includes one of the medications he is on-linezolid.  His last dose of this medication was yesterday so I am hoping the platelets start climbing.  Pray for this too.  

The nurse also stated that the platelets can sometimes drop as your body starts making its own stem cells, which produce your blood and it's components, instead of running off of the cells that were given during transplant.  He had a type and screen ran on Monday which identified his cells as B+, but the plasma and such were still not registering...so once again, he has no blood type.  As crazy as this seems, this is progress.  A couple of weeks ago he was blood type AB+, a mixture of both his and donor cells.  His own A+ red blood cells are now dying out and being replaced with the donor type, which is why it has changed once again.  This also supports the idea that the stem cells are now kicking in on their own.

I am having to consciencely try not to hold everything to the same standard as the last transplant because, as the Nurse Practitioner reminded me, this is a different transplant, with different cells.  The similarities and differences can have different causes and different outcomes.

(I am attributing these new cells with the fact that my husband actually ate his first Oriental Inn cashew chicken this week.  This has NEVER happened before.)

As I stated earlier, please pray that I can find peace.  Also pray that the +100 day biopsy that will be done in a week and a half shows that we have made it past another hurdle.  

Last time we made it to day +156 before it fell apart on us.  

Pray for me, pray for us, and pray that we continue to mark off milestones...and are able to have many more anniversaries spent together.

Monday, October 19, 2015

The BEatitudes

  "This is Kim.  We've become friends.  She always has a smile on her face."

I had to keep myself from dramatically looking over my shoulder in search of someone else named Kim.  Someone else that she could be speaking of.  Someone else that she was introducing to her daughter. 

It couldn't be me.

"......she always has a smile on her face." 

That couldn't be me.  Didn't she know the constant anxiety and sickness that I felt standing in those hallways?  Didn't she know that as Steven and I walked I would mentally recite The Lord's Prayer?  Didn't she know that there were times I thought that I would go crazy if I spent another night in a hospital room?

Didn't she know...me?

*****

As I think about the days spent in the hospital, and the time that she and I had spent talking and getting to know, and lean on, each other, I had to admit that the worry did seem a little bit further behind me.  At least in those moments.  Comforting and supporting her gave ME peace.

The anxiety also seemed a little more distant when I would take advantage of the "happy hour" down at the cafeteria and bring drinks to the nurses.

When I had the inevitable conversation with other families, and patients, about the diagnoses that brought us all to this place, I also found that I was extremely optimistic about the road that they had ahead of them, despite the road that we ourselves had traveled.

How was this presentation of myself so different than the me I knew so well?

It seemed that the public side of me was in stark contrast to the side I saw in the mirror.  The one, that, if taken by surprise, others got to see as well.  I tried to keep this part of me private, so not to mar the surroundings and add to the despair that so many walking this earth are experiencing themselves.

However, I wasn't always successful at hiding that part of me.  Once, when huddled on my cot next to Steven's bed, I couldn't shake the anxiety that had me in its hold.  In fact, just speaking aloud would cause me to break down in tears.  I avoided conversation with Steven, I didn't answer my phone, and I stayed out of the hallways.

When the nutritionist that had followed us, and advised Steven since his last transplant, poked her head into the room, I was caught.

When she looked at me I knew she knew where I was, mentally.

"How are you?"

Not trusting myself to speak I simply shook my head.

She came closer.

I knew I wasn't going to be able to avoid conversation, and I warned her, as tears started flowing, that I was going to cry.

She sat down.

We talked for quite awhile and I explained that I had no real reason to be in this state.  My mind, in its finest form (insert sarcasm), had analyzed and over-analyzed every blood count and fever spike, and relived the last year of Steven's patient history.

I drew comparisons where there weren't comparisons to be drawn.  I saw differences where I didn't want to and similarities in the same place.

I had mentally made myself sick...all because I couldn't predict the future.

And she understood.

Although she didn't face the challenges that I faced, she, like the rest of the population, faced her ownOver thinking, over analyzing, and wanting control in an out of control world...were just a few of the challenges we shared.

As we laughed and joked about our personalities, and the angst it caused our husbands, I found that once again, the worry and anxiety, seemed a little further away.  I was, after all, no longer curled up on the cot.

What began as her comforting me, ended as me voicing my understanding of her, and, I believe, the two gave both of us some solace. 

Isn't it nice knowing that you aren't alone?  Physically and mentally.
 
When she left the room I got up and washed my face, put on my make up and a smile, and, once again, looked forward to "happy hour" in the cafeteria so I could surprise our nurse with tall glass of caffeine to help get her through her shift.

*****

When I think about the different "sides" of me and the transformation I make when going between the two, I really shouldn't be surprised.  I think we all have a choice over which side we spend more time with/in.

I don't believe God intended us to stay in the fetal position, alone, dwelling on what might, or might not, be in our future.  We are supposed to continue forward, living our lives, following Him and being an example of His love in the lives of others.

Jesus is an example of this.  He was human, and had human experiences.  Before his crucifixion he was in so much anguish that he sweat blood in the Garden of Gesthemane.  It has been speculated that it wasn't the knowledge of the horrible death that he was about to endure, but rather the weight of all the sins he would bear - on our behalf , that caused him such agony.  The separation from God that those sins caused was no doubt a form of "hell itself".

However, the humanness in Jesus could have led him to be consumed with anxiety over what was to come.  He could have spent years paralyzed with fear. He could have worried and stayed consumed by despair his entire life. He could have chose to stay in the fetal position.  He could have hid from all those who needed his mercy and comfort, and rather than console and heal, he could have wallowed in his own self-pity.  He could have offered up comparisons..."you think you have it bad?  Well, listen to what I have to do..."  

But he didn't.  Instead, Jesus filled his time with being of service to others. 

And, really, aren't we called to be like him?  Should it be of any surprise to me that my anxiety was lessened by helping, or supporting, others?  Isn't it hard to be sad when you are giving others joy? 

Aren't we all supposed to show Christ's love to others?  And that love, thankfully, doesn't mean turning away from those in need and allowing ourselves to be consumed by our own fear of the future.
 
God has shown us that through His son, Jesus.

If, in the midst of his persecution, he could place the needs of others first, can't we, at the very least, strive to do the same?

"A life not lived for others is not really a life." - Mother Teresa

A life spent in the fetal position worrying about "what ifs" isn't really a life either.  I am challenging you all, and myself, to get out and live.  Live by helping others.  Live by smiling at the cashier.  Live by doing something small.  Live by doing something large.  Live by sharing "happy hour".  Live by taking the focus off of "me" and turning the focus onto others.  Live by taking the focus off of "what if" and turn it towards "what is".

I believe, after looking deeply at my "two sides", that living for others really is the only way to actually "live".

There will always be "what ifs" in this life I am living.  I know all too well that things don't always work out the way that we hope and pray they will. 

But sometimes they do.

In the meantime, strive to be the answer to someone else's prayer.  Or someone else's thirst...

Blessed are the poor in spirit,
    For theirs is the kingdom of heaven.
Blessed are those who mourn,
    For they shall be comforted.
Blessed are the meek,
    For they shall inherit the earth.
Blessed are those who hunger and thirst for righteousness,
    For they shall be filled.
Blessed are the merciful,
    For they shall obtain mercy.
Blessed are the pure in heart,
    For they shall see God.
Blessed are the peacemakers,
    For they shall be called sons of God.
Blessed are those who are persecuted for righteousness’ sake,
    For theirs is the kingdom of heaven.
 
*****

Steven is doing really well, and looks good too.  It does my heart good to see him this way.  He has been walking around the block by the duplex, and is trying to eat more each day. 


We have yet to see his doctor, Dr. Jacoby, but we saw a nurse practitioner last week.  Steven had what looked like the Graft Vs Host rash that I prayed so diligently for last time.  Although it is still considered a good sign, a sign of a working immune system, I know that this time, I can't put my faith in signs.  Signs are great, but they aren't without exceptions.  My faith has to be in God and His will for my husband, and my family.

Steven's counts have continued to rise, which is good.  We are expecting his red blood cells to take a little longer, since he had a mismatched blood type donor. 

I am sure that tomorrow, when Steven sees his doctor, he will start pushing to be released to go home.  We will see what her plans are and what she would like to see from him before giving us the "ok".  He has been taking prednisone for the rash, and we have started tapering off.  I will be anxious to see if the fever returns after he is off of the steroids, as it can sometimes mask it.

The 30 day bone marrow biopsy results showed no cancer and the genetic mutation wasn't present.  We spent all day waiting for results and I spent much of the day sick to my stomach.  Again, we know this is no guarantee of the future.  None of us have that.  However, we at least have made it over the first of many hurdles. 

We are waiting to see the engraftment percentage, but I'm less fearful of its outcome.  However, prayers are still wanted and welcome.

Now...get out there and live!  (And if you happen to see me, returning to the fetal position, remind me to do the same.)

 



Wednesday, September 09, 2015

Black clouds and rainbows

Once again I find myself sitting in a hospital room looking out the window.  The view is different this time, thanks in part to some kind nurses who took pity on a family who had experienced the same view for over four of the last 11 months. 

Yeah.

Eleven months.  Twelve actually.

Eleven months since our first stay in St. Louis and one year (and four days to be exact) since Steven was diagnosed.

A year.

(Typing that made me cry.)

Although my heart keeps beating and my lungs keep breathing, there are times that I feel as if I haven't been alive for just over a year now.  Instead, Steven's diagnosis has, at times, kept me in a purgatory of sorts.  Not alive, but not dead.

Actually, that isn't true.  Steven's diagnosis hasn't done that. 

I have.

There are people who have faced, and continually face, uncertainty and adversity.  They still find joy, and pass joy on to others.  Or, at least, it seems they do.  I know I laugh with friends, make jokes about some of the craziness life has thrown my way, and had moments where, if you were on the outside looking in, you would think that I AM joyful. 

And, maybe, in those moments, I actually am. 

There are moments that despite the black cloud I feel I have looming overhead, it is impossible not to see the joy that life truly does have to offer. Sometimes rain bursts forth from the cloud and it blurs and makes the lighter, brighter side of life, hard, if not impossible, to see.  However, the Son always shows up, dries up the rain, and reveals a rainbow of hope in so many shapes, sizes and forms.

The truth is, I do have SO much to be joyful about.  So very, very much. 

Even when the rain makes it (really, really) hard to see.

Living a life unable to recognize all the good and all the blessings that have been put in it?  Living a life with blinders to the daily miracles alive in our own lives?  Living a life that is dull, gray with hues of only black and white, because you are too far down in your own despair to see the rainbows of hope, love and joy that God purposefully places in YOUR life? 

Well, that would truly be failing to live.

So, maybe although there are times that I feel that I haven't really "lived" this past year, I realize that this is only true if I use the definition of "living" that I had prior to Steven's leukemia.  Truth be told, in some ways I have been more alive than I have ever been before. 

I won't lie.  Living doesn't look the same as it did a year ago.  Joy doesn't either.  And although there are times I would jump at the chance to return to that life, there are other times that I wouldn't dare give up the "view" from here.

Amazing things have been revealed to me this past year.  The love, friendships, community, support and faith I have been witness to are what life, and living, is truly made of.

Moments when life looks gray, and dreary, I force myself to find the Son.  He's always there.  And time and time again, just when I think the rain will never stop, there is a rainbow that reminds me of a promise that the rain won't last forever.

******

Tomorrow is Steven's transplant.  We don't know the particulars on the time yet.  Apparently  two flights are scheduled.  If the donor is done with the process by the early flight time, then the transplant will, most likely, be around 3 or 4:00 pm.  If not, the cells will arrive on a later flight and the transplant will be around 8-9:00 pm.

As I had stated before, the transplant in itself is a rather anti-climactic time.  It is a bag of cells that are gravity fed into Steven's body. 

It is what is happening in Steven's body that is climactic.  Very much so.

The dreaded "hard time" is predicted to be days +6 to +12.  Tomorrow is day 0, with each following day being day +1, +2, and so on.  This hard time is due to the delayed effects of chemo and radiation, as well as being the time when his counts will bottom out.  It is also during this time that his new cells should start engraftment. 

There are so many things that have to happen to make this transplant a success.  Please pray that the cells engraph, that the GVHD is minimal and manageable, and, of course, that the donor cells scare the leukemia so bad that they decide to never return.

Also, it goes without saying to pray for my kids.

There have been some amazing things that have been shared with me by people who have been praying for my husband.  These things have given us so much hope and encouragement and someday, I hope to share with you how God revealed Himself to so many of us during this most difficult time.

Please keep praying.



Wednesday, August 19, 2015

Umbrella

It hit me out of nowhere.

After days of having the most inner calm that I've had since I can really even remember, the hands of anxiety came and firmly gripped me...and squeezed.  

I was standing in the line at Dollar General, doing the ordinary task of picking up toothpaste and trash bags, when I felt like someone had hit me in the stomach.  There sandwiched in line between customers waiting to check out, I thought I was going to be sick. Thankfully, I was able to pay for my items without leaving anything behind for the cashier.

When I got home I saw that Dr. Jacoby's nurse had called and the feeling intensified.  I had been corresponding with Dr. Jacoby by email and I didn't realize how much anxiety that the 314 area code caused me.

Athough the call wasn't accompanied by any bad news, I hung up and was in tears.

What I DID find out is that the transplant WILL be September 9th.  We will return to St. Louis on Sunday, September 6th for Steven to start chemo.

This coming Tuesday, we will go to St. Louis for a previously scheduled doctor's appointment.  While there, Steven will have to retake a pulmonary function test, as well as have another echocardiogram, to verify he is healthy enough to go to transplant.  (He had the same tests in May, but the tests had to be within a 90 day period of transplant, and we will be outside of that.)

He will also have another bone marrow biopsy.

Steven and I both marveled that he had to repeat the biopsy.  I am sure there are reasons, but from our vantage point we know he has leukemia.  The plan of action has been set.  There has been no talk of changing that, regardless of the status of the disease...  So, truthfully, we aren't sure the reason for it, other than to possibly gauge the progress/regression.

Right now, all we know about the donor is that it is a 22 year old male and his blood type is B+.  This means that Steven's blood type will change.  Although for some the process goes quickly, the nurse said it was more common for the change in blood type to take several months.  She also said that for a time, Steven could be without a type. 

What does that even mean?  How is that possible?

This change, and the time it takes to complete it, can cause Steven to be anemic until the process is completed.  Having to have regular transfusions is not uncommon but the nurse assured me that the white blood cells could still very much be doing their job-eliminating the cancer.

Hearing about the long road ahead of us just fed my emotions that were already bubbling over.  The news wasn't new, but somehow, some way,  I hadn't let the weight of it settle on me.

Until today.

*****

As I sat in my closet floor sorting clothes after completing a manic cleaning session, Lakyn told me that someone had came to see Daddy and was currently praying with him in the living room...

I looked at my clean closet, and saw Steven's shirts and jeans, and I wondered how I would ever survive if I had to live without the man who wore them.  I knew then that, in these past few weeks, I had been lured into a false sense of security by all the normalcy surrounding me:  back to school shopping, school forms, packing lunches, cleaning, mowing, taking the kids to school, and even working from home some for the funeral home.   It became easier than it had been to push the gravity of the situation a little further back in my mind.

Now, trust me, the reality of the situation never leaves.  It wakes me at 2 am with a prayer on my lips for God to spare my husband.  And then again at 4 am.  I send up prayers all day long.  But, lately, I had been able to navigate around it, instead of being stuck in it.

I'm afraid I am stuck again.

I have to trust God that these moments were not an oversight of worry on my part, but rather a blessing to my kids.  A calm in the storm.

But, sadly, the storm isn't over...

Your prayers serve as the umbrella that protects us from that storm.  Please keep them coming.

Friday, July 31, 2015

Healing hands

Life is funny.  Well.  Not really.

I thought that I was struggling at home, fighting the reality that is now my life, only to find that our reality got a little more...uh...real, when Steven spiked a fever at one of his regularly scheduled appointments on Tuesday, scoring a re-admission to the hospital.

And the hospital, my friends, is where we "celebrated" his 42nd birthday on Wednesday and have spent each day since.  Apparently this year the place to be on your birthday is St. Louis.  More specifically, Barnes.

*****

Today was rough.  Today I found myself lacking any sense of peace that I had thought I had secured.

The fever that Steven is running is now believed to be caused by the leukemia.  He had came home from the hospital in June on 80 mgs of prednisone to keep the Graft Vs Host disease in check.  Once home, the doctor, when noting that the blasts in his blood had increased, had decided to start backing off the steroid at a faster rate than we had been going, hoping the donor cells would kick in and help the outpatient chemo to do it's job.  

The steroid, as it turns out, was also masking a fever that he never broke during his last hospitalization, and the reduction of the steroid was enough to allow it to break through.

So now, Steven is battling a fever, a rapid heart rate (due to fever), and recurring Graft vs Host Disease.  

*****

If the explanation of what is going on with Steven sounds complicated you can't even begin to imagine how complex the disease itself actually is.

And smart.

It learns how to adapt to survive chemo.  It learns how to adapt when you no longer eat.  It learns how to adapt to present itself as "safe" to your immune system.

It is smart enough to kill you.

A few people have offered advice and suggestions on things to do to aid in Steven's healing, and I appreciate their concern and their support.  However, some "advice" I have received has came from an individual that sadly is uninformed on the complexity of the issue at hand.  

And it is sad.

I can't imagine sitting at a computer and issuing medical advice to someone I don't know, about an issue I have no personal experience with, and shaming them for following a treatment prescribed by someone who has spent time and money educating themselves about this very disease. 

And, apparently, it may come as a surprise to some that not everything you read on the Internet is true.  

I love my husband.  You can't even imagine how much.  I fell in love with him when I first saw him. I was in the sixth grade.

No one wants him healed as much as I do.  

However, we have put our trust in God and our physician.  Jointly.  I truly believe that everyone we have been in contact with at the hospital wants my husband to beat this disease.  

God can use whatever avenue He wants to heal someone. For some, maybe it is divine intervention.  For others it is through the hands of the doctors and nurses. And for some, the healing doesn't happen on this earth.

However, I pray that Steven's healing is of this world and in this lifetime.  Regardless of your stance regarding modern medicine, the most beneficial thing you could do for our family is to pray for this too.

Sunday, July 19, 2015

What tomorrow holds

Steven is currently on his last day of seven consecutive days of chemo.  He has tolerated it well so far, and I pray that the chemo does the unexpected and puts him into remission.

****

I have struggled the past month and have  had overwhelming feelings of depression creep up on me. I increased my meds, and my prayers, and both seem to be helping.

Steven has given me comfort and he probably doesn't even know it.  It is the conversations we have, both light hearted and serious, that have made me feel stronger and more capable of getting through this.  I see glimpses of who he is, and has always been, and that gives me encouragement and hope.

Still, I wondered if, like me, he had fear that was lingering all too close to the surface.

*****

After spending the morning in an old hospital room, now converted for outpatient services, we were trying to kill time in whatever way we could. He had already had the chemo, but the blood transfusion took four hours.

It's a long four hours when all you want to do is be home.

We laughed and talked about random subjects but, seemingly out of nowhere, I felt compelled to ask...

"Steven?  Are you scared?  At all?"

Without hesitation he said he wasn't.

He shared that he, of course, wanted to live.  He wanted to see the people his children grew to be.  He wanted to grow old with me.  

He wanted, very much, to live.

However, fear wasn't part of the equation if he didn't.  He stated that he prayed every night that God would heal him and forgive him of his sins...but that he knew without question that God's will would be done, and he wasn't afraid of that.

Generally when Steven spoke about the possibility of not overcoming the treatment, or disease, I was filled with fear and anxiety at the thought of it.  However, that day, in that room, I was filled with nothing but peace at his words.

****

Our conversation that had started off so light hearted, had become increasingly deep.

Steven shared that, although he wasn't afraid, he DID wish he knew how this all would turn out.

I had just written about the very same desire.  In the moment he spoke the words, I could so clearly see the danger in knowing what the future held.

Without thinking I said, "No, you don't!"

I explained that I had prayed for the very same knowledge.  I felt the future would be so much easier IF I could only know that Steven would be ok.  But then, in that moment, I could see exactly what we stood to lose with that very knowledge: countless blessings.

I told Steven to think about what our lives would be like IF on September 5th, in the midst of the pain surrounding his diagnosis, God came to us and said, "Guys.  Really.  Relax.  Steven, you will be healed.  You will have one transplant, using your brother's cells.  Yes, the same brother you haven't spoke to in ten years. It will fail.  You will relapse. You will have a second transplant with an unrelated donor and you will eventually be cured."

I know what Steven would have done, given THAT knowledge.  Being hard headed, and stubborn, he would have REFUSED to reach out to his brother.  He would have said, "Um...thanks but no thanks, God.  I'll just skip ahead to the second transplant."  

And knowing his brother, Jammie would have refused to reach out to Steven, feeling that it wouldn't really matter in the end.

But, oh, how it has mattered!

God has unfolded a story that has yet to be completely told.  Maybe someday.

But in the meantime?  What did that "failed" transplant do?  

It changed lives.  

Steven now has a brother that he speaks to every day.  They both end the conversation with "I love you".

Steven and I both have two nephews who are incredibly kind and loving. They make Steven laugh in a way I haven't heard in a long time.

My kids talk about their cousins with pride in their voices and have marvled at how seamlessly they have came together as a family. "They just fit."

As Blake, in amazement, pointed out, my kids now have an aunt who "loves us even though she is just getting to know us".

Blake, my child who is slow to warm up to people, immediately latched on to his uncle Jammie, declaring that he was "his new best friend".  They are, in Blake's words, "buddies".

And there is so much more.

The healing that Steven has experienced since his "failed" transplant has had nothing to do with leukemia. The wounds were much deeper and the prognosis, believe it or not, was much more grim.

God healed Steven and Jammie both with that "failed" transplant.  The transplant that neither would have taken part in if God would have shown them how it would all turn out.

How great is it that we ARE NOT in charge and DO NOT know what the future holds?

If God was to tell me today that Steven would not survive this disease, what blessings would I fail to give, or receive, because I couldn't get out of the fetal position, or out of bed?

Today I am thankful that I do not know what tomorrow holds...but rather WHO holds it.








Thursday, July 09, 2015

The middle pages

I have found myself feeling, and staying, very low.  The kind of low that has you curled up in the fetal position on your closet floor.  The kind of low that makes you cry in public, randomly, and without discretion. The kind of low that clouds your thinking and inhibits your ability to do things that you HAVE and NEED to do.  Like parent.

My kids have been trying to support me and our roles have suddenly been reversed. It feels wrong and like a huge failure on my part. 

*****

I walked down our drive to our mailbox in one of the only times of solitude I have had.  We had received the phone call stating that the cancer was still in Steven's marrow only an hour or so before.  The walk was filled with tears, and prayers, as well as questions and uncertainty.  Sobs racked my body like they hadn't since Steven's initial diagnosis and there was no keeping them in.

When I raised my head I met Lakyn's eyes as she was standing in the middle of the drive.  

I had no idea she was anywhere around and I immediately felt guilty that she had caught me in such an intense moment of weakness.  She came to me and hugged me and said, "It's going to be all right".  Unable to stop what had already started I found myself admitting that it just might NOT be alright.  There was no guarantee.

In the wisdom of someone much older she told me that she knew that, but that this was God's plan.  She hugged me and said that this time was an opportunity to draw closer to God and for her daddy to also strengthen his relationship with Him as well.  

I confessed that I was so afraid of losing her daddy and by my absence during these times, losing her and Blake as well.  I wasn't able to be there each day and night, and will be separated once again. Others celebrate with them the things I should be celebrating.  It was only when I choked out, "I'm your biggest fan!" I want to be here to cheer you on!" that she admitted that she was going to cry.

But she didn't.

With the determination that was given to her by her daddy's genes, she said that she could see the improvements that he was making every day and that he was tough.  This transplant might be all he needed and if not, she believed that HE was tough enough to go for a third.

She walked me back to the house and kept her arms around me.  I went inside and to my bathroom to wash my face.  She followed me and I apologized for my weakness and selfishness.  She rubbed my back and again, in a wisdom FAR beyond her years, she told me that she knew I had so much to worry about.  "You've got daddy, me and Blake to worry about and even more things than I know, but all I have to worry about is daddy...and you."

I am trying my best to eliminate my name from her list.  

****
The last couple of days I have noticed a concentrated effort on both her and Blake's part to lift MY spirits.  They won't fail.  I will not let them.  I have to rise above this.

Blake, the child who is wired like me, even reminded me of the bright side.  He came to me and said, "A week ago we didn't know that there was any option other than another transplant... Don't be upset that we are on the road we had originally prepared to be on."

He is right.

I will push my mind to stay on track.  I have to.

The kids both made me bracelets.  One says, "Smile Mommy" and the other says "sklb❤️shelton" (representing us all).  

(The orange bracelet was given to me by a friend that I met who has also went down the transplant path with her husband.)



Even more poignant was a quote the kids had written for me on the leaf of a handmade flower.  It was a quote they had heard years ago on a Richard Petty interview (of all places) and I didn't know they had even taken notice. It is, "Don't put a question mark where God puts a period."  I am reminding myself of this daily.

Please pray that I can see the story that God has written for my life as it is still unfolding.  I am spending all my energy trying to skip to the last page, trying to figure out how this story will end, instead of living out the pages that have been written in the middle.  

*****

As I am writing this, Steven is currently receiving platelets here at Mercy.  


He will return on Monday and start chemo for seven consecutive days.  It is outpatient and an hour infusion.  I am thankful that we are at least close to home, and can return there each day.

The doctor stated that there is a small chance that this chemo could put him back in remission, but that would be a bonus, and not what they were expecting, or shooting for.  The intent is to merely keep the leukemia from exploding before transplant.  This round of chemo will be, in her words, "like water" in comparison to what he has been through.

We are also backing off on the immunosuppressants in hopes that Jammie's cells might kick back in and take over the lingering cancer for now.  However, another transplant is in our future in the next 6-8 weeks.

She didn't feel another aggressive round of salvage chemo would be worth the strain on Steven.  There is only a 10% chance that it would be effective since the last round wasn't.  She felt it more beneficial to do the seven day chemo regimine, allowing Steven to be at home and regain strength, weight and mental fortitude.  And he HAS gained weight. He is up ten pounds since June 23rd, weighing in at 123.

I have been doubtful of the results of the next transplant, simply because EVERY. SINGLE. THING. went right last time and then...the cancer came back.  We had every indication that Jammie's immune system was healthy and doing it's job, but this cancer is sneaky, and transforms and changes to fit the environment.  

How, oh how, could the next one go any better?

Dr. Jacoby assured me that it certainly could and that if they didn't believe it, they wouldn't be doing it.

I also have to remind myself of THIS daily.    

Please, please pray and ask for God to heal my husband, allowing him many more years to see the amazing people our children are becoming.

Amen.

Tuesday, June 30, 2015

This little light of mine...

It goes without saying that I have never experienced an emotional rollercoaster like the one I have been on since September.

I remember a nurse saying there would be highs and lows, but I was too ignorant of what was ahead of us to appreciate the truth in what she was saying.  I think that with any cancer diagnosis, there are lows.  That's a given.  Many times, in the midst of treatment, there are highs.  However, when you add in everything that life throws your way, those highs and lows get even higher...and lower.

*****

I felt the blood drain from my face as I looked at him sitting only a few feet in front of me.  People were arriving to the party, ready to celebrate Blake's birthday with us.  As people laughed in the background, all I could hear was Steven's words.

A few minutes before he had told me that he felt especially tired and drained.  I couldn't imagine him feeling anything but.  However, as the time passed, he pressed upon me how bad he truly felt, as he explained that he felt like his body was just shutting down on him.

My fear was palpable.

I told him that if he truly felt that way, we needed to head to St. Louis right away and make sure that his blood work was within a normal range and that nothing, such as infection, had started to take hold.  I was scared.  Terrified, in fact.  

He told me he wasn't going.

It seemed obvious to me that if he felt as if his "body was shutting down" that going to the hospital was an absolute necessity, and I told him so.

He looked at me and said, "I am not going back."

I,  being completely incredulous, said "are you just going to stay here and die...?"

There was NOT ONE fiber of my being that was prepared to hear him say, "yes".

I felt my ears start ringing.  I remember looking out the front window and seeing the kids playing ball in our front yard.  I thought about Blake and how, like every 10 year old, he was so excited about his birthday and all the celebrating that it brought.  I watched as Lakyn laughed and caught a ball that my cousin had thrown, everyone oblivious to the conversation that was happening at the dining room table.  Everyone except Jammie, Steven's brother.

I looked at him. He was scared and I was too.

I looked back at Steven, and he held my gaze, not backing down.  I started crying.  I couldn't believe that Steven, my rock and the most positive and determined man I knew was threatening to throw in the towel. 

I looked back at Jammie and said, "help me".  I could tell that he didn't have the words, as he was fighting to hold it together himself.

****

We ended up going to St. Louis that night, and on the drive there Steven apologized for his earlier declaration.  He was adamant that he didn't mean what he had said, but was exhausted with being away from home and missing so much that life has to offer. I knew what he meant.  I was exhausted too.  I didn't want to spend Father's Day and Blake's birthday spending the night in a hospital either, but I was desperate to spend my future with Steven by my side.  Although, I didn't want him to feel guilty for feeling like he had reached the end of his rope, I didn't want him to lose sight of all he had to lose. What we ALL had to lose.

So, we talked about the kids.  We talked about our future as a family.  We talked about how much the whole situation completely stunk.  That night I even said the words I swore I would never say, "It's not fair!"

As soon as I said them, I regretted them. 

Of course it isn't fair. Life isn't. One walk over to the Children's Hospital and that fact will never leave your sight.

In fact, instead of lamenting how life isn't fair, we decided we should be celebrating it.  If we got "what was fair", how different would our life be?  Namely, if God gave us what was fair, we would have NO reason to push on.

But life isn't fair.  And aren't we lucky it isn't? 

As we drove to St. Louis we thought about all the blessings that we had. The fact that my kids were staying up "late", celebrating the arrival of Blake's hour and minute of birth along side Aunt Sissy and Jason, laughing and happy, was a blessing.  The fact that our family stayed at the house, even after we left, making sure that Blake's birthday celebration continued, was a blessing.  Having so many people lifting us up in prayer, was a blessing.

And there were more.

Many, many more.

How lucky are we that life isn't fair?

*****

Today we saw Steven's doctor for the first time since his discharge from the hospital.  The old familiar sickness that settled in my stomach before each appointment was still present.

However, today's visit was filled with much more than we had anticipated.  We arrived knowing that we had a repeat bone marrow biopsy ahead of us.  I also had planned on discussing with Dr. Jacoby how we could assure that Steven did not lose additional weight during the next transplant, since he had lost so much during the last round of chemo.

What we learned today was that we are still, very much, on that roller coaster.

Apparently, yesterday, Steven was the topic of several BMT physician's round table discussion.  The discussion was a lengthy one at that.

It has been decided that after reviewing his "case" and taking into consideration the strong occurrence of GVHD (Graft Vs. Host Disease) after receiving the boost of Jammie's cells, that IF today's bone marrow biopsy shows that Steven is currently in remission, then we will hold off on going to transplant.  The GVHD was a good sign that Jammie's cells are also exhibiting Graft VS Leukemia, and there is a 30% chance that the boost alone will keep Steven in remission.

Granted, 30% isn't ideal, BUT, before today we thought that there was a 100% chance that we were going to transplant in the next 4-6 weeks.  And now there is a 30% chance we will never have to go to transplant again.

We will take it.

IF Steven relapses, or the cancer is still taking over his marrow, then we will proceed forward with going to transplant. However, even the transplant scenario is looking up, IF we have to go down that road again.  After the doctor conducted another registry search after Steven's relapse, TWO 10/10 donors were located! The potential donors have submitted their blood samples to be worked up, showing they ARE willing to donate.  One donor is 20 years old and the other is 40, and both would be very viable donors.

*****

I pray that we never have to go down the transplant road again.  I realize there is a 70% chance we will, but God has worked with worse odds.  I am thankful that there is a possibility for Steven to regain some health if Jammie's cells only keep the cancer at bay for awhile.  But, like I said, God has worked with worse odds and maybe Jammie's cells will be the only cells we ever need.

I ask that you pray this is the case.  Please pray for the cancer to be absent from his marrow and for him to have a lifetime of remission.  His labs today showed 1% blasts.  Pray that this was simply immature cells and not cancer.

After so many months of prayers for Steven's healing, I wonder if the prayers are becoming redundant to God.  But, who knows, maybe, just maybe, the squeaky wheel gets the oil? 

This past week I read Before Amen by Max Lucado.  I guess I was trying to find some evidence of hope and answered prayers.

I wasn't disappointed.

One specific story told by Max stood out.  It was of a cowboy at a rodeo.  That alone seemed fitting.  His name was Freddy Vest.  Max shared how Freddy was participating in the calf roping when he fell off his horse.  He was "dead before he hit the ground."  A nearby friend ran to him and held his head and immediately began to pray.  So did the person administering CPR. 

Before long, the whole audience at the rodeo was lifting prayers on Freddy's behalf.  Over 45 minutes later, en route to the hospital, Freddy's heart began beating again.

Freddy recounted his experience by saying, "I was with the Lord", and told of the indescribable peace and love that he felt.  At this time he was able to actually SEE the prayers being lifted to Heaven on his behalf.  He stated, "God allowed me to see the prayers that came up for me.  It started with one bolt of light.  And then there were two bolts of light and three.  Then there was ten.  And then there was, like, hundreds, and then there were thousands of bolts of light.  Each one of those bolts of light was a prayer that someone had sent up for me.  And when there got to be so many bolts of light, it exploded into the brightest light....That's when God sent me back."

(Freddy recounts the full story in Freddy Vest, The Day I Died: My Breathtaking Journey to Heaven and Back)

What I am asking is for you all to help me fill Heaven with bolts of light, until prayers for Steven and his healing explode all across Heaven. 

After all, it seems fitting that prayers be described as bolts of light, because your support has been a light to Steven and I during this darkest of times...









Tuesday, June 09, 2015

Baby steps

Today was the day that we were to be celebrating Steven being 6 months cancer free; his six month re-birthday.  However, it was not to be.  This round of chemo has been harder than the others on him and the recovery has been slower. The boost of Jammie's cells gave him an almost immediate resurgence of Graft VS Host Disease.  The doctors were in disbelief that it came on so soon.  The rash, and gastro-intestinal issues were back with a vengeance, and he had a fever to go along with it. 

After there was no denying that it was the GVHD, even though the timing seemed impossible, they began treating him with steroids (140 mg of prednisone, and another I don't even know), as well as immunosuppressants:  tacrolimus and cellcept.  The improvement came about almost as quickly as the symptoms.  However, he is still far from back to normal.  He has yet to eat anything and is only drinking small sips of water, or Gatorade, throughout the day.  But, looking at the bright side, he is now up and walking and a few days ago, I wasn't sure when he would feel up to that again.

I will admit, this round has been harder on me too.  I'm scared.  The leukemia has shown it's persistence and when I look into the future, I am scared at what it might hold.  In fact, right now I avoid looking into the future at all.  We had planned a trip this summer that isn't going to happen, and we had planted a garden that we were excited to see grow.  Those things that I had allowed myself to look forward to were in the near enough future that I thought it was "safe" to at least let my mind go there.  I was wrong. 

I know that none of us are guaranteed a future.  There is no need to remind me.  I recognize every blessing that we continue to receive and I say a prayer of thankfulness for them.  However, I can't pretend that when Steven presses his forehead to mine and tells me he loves me, that I don't wonder how long I have to hear those words from him.  I see him break down, not because he has cancer, but because he wants so much more for his family, and it tears me apart.

This isn't a pity party that I am throwing for myself.  It is just me coming to terms with everything that makes up my life right now.  I know there is hope.  God gives us that.  Silent prayers make up most moments of my day and I recall the words that Lakyn wrote on the board in Steven's room, "This is all God's plan." 

My focus must remain on that right now.

*****

There is still no timeline for transplant.  We haven't spoken to the doctor since last week.  Right now, we are just taking it a day at a time, looking for each small sign of improvement that tells us we are headed in the right direction.  And we have had them.  The difference in Steven from Friday until today is pronounced.  Again, he is nowhere near where he needs to be, but he is equally as far from where he has been.

Please continue to pray for us all and for us to embrace and accept God's plan...whatever it may be.

Wednesday, June 03, 2015

Because I don't know the plans...

A couple of months ago I was mowing the yard and marveling in the "normalness" of the activity.  I thought about the roller coaster of our life, and how many things had changed since I had mowed the yard last year.

As I looked at everything that had happened: the diagnosis, the persistence of the leukemia, the transplant, and the ups and downs of recovery, I could almost see the VERY reason each of the trials had happened, and all the good that had came from the horribleness of the disease, and the ways that it had strengthened our faith.

And that scared me.

For those of you that know me, you won't be surprised by that.  I'm always waiting for the "other shoe to drop".

However, aside from the now expected uncertainty that will forever cloud our lives together, I found myself thinking about the bigness of God, and His plans.  The very fact that I thought I could almost make out the path we were heading down, and why we hit each bump along the way, made me doubt that I even knew what road we were actually on.

And, as it turned out, I was right.  I didn't.

I don't believe God works in a way that someone as flawed as me could decipher and solve.  His ways are much bigger than mine, as is His understanding. As I told kids after Steven's first diagnosis, we may not know the reason for our suffering and pain until the day we are face to face with God in Heaven. 

I keep reminding myself of this.

Over and over.

Sitting in this hospital room, watching my husband, face and chest bright red from a reaction to an antibiotic, struggling with a fever than has all but refused to go below 102.9, has, at times, required me to look deeper for the blessings and be mindfully conscience of my thoughts, but, always, when I look, the blessings are still there.

Seeing the (already too thin) man I love lose 10 pounds in two weeks, unable to eat or drink anything, reprimand himself and vocalize that he is "disappointed in himself" because of his inability to rise above his current condition and do it for his family, pushes me to seek God and ask for His healing, acceptance and peace.  Mental, and physical.

And He is here.  In this hospital room.  My mind has had to work harder to recognize Him at times, but my heart knows He is still here.  And He will continue to be.

Recounting to the nurses all the blessings that so many of you all have showered on us, feels like a way to make Him visible to others, and allows me to see Him more clearly myself.  It's also a good reminder to us both that we aren't alone and that so many are praying for Steven's healing and praying for strength and discernment as our family travels this road we've been called to walk. 

This walk, our journey.

**********

Currently, the plan is to go to transplant as soon as possible.  This means that, at the very least, we will be home for a couple of weeks prior to returning for transplant.  We could be home longer, but that would mean that we were waiting for the donor to complete things on their end.

And, yes, right now it looks like we have a donor. 

We don't know who, or where they're from, but we do know that initial tests show that they are a 10/10 match for Steven.  They have been notified and have already submitted the follow up blood work, which will be used for confirmation, to the lab.  Dr. Jacoby was impressed by the timeliness in which they had already gotten the initial sample to be worked up.  This shows us that 1) They have been located, 2) They have been notified, 3) They are agreeing to donate, and 4) They have been prompt at their response to the need, thus far.

Thank you to all of you who swabbed for Steven.  Although you might not be his match, you could be someone else's.  Someone who has a life, and a family, and people who love them.  Someone who could be waiting on, and depending on, someone on the donor registry to give them a chance at life. If you haven't joined the registry, I would highly recommend you consider it.  Our eyes have been forever opened to the need.

I know of one person who joined the registry after Steven's diagnosis that has already been notified that they might be a match for someone else.  Steven and I both view this as a HUGE blessing that has came from his diagnosis. 

Maybe in our darkness, someone else has found their light.

I recently read the book, "The Butterfly Effect".  It is short and sweet, but gives a very interesting up-close look at how all our lives are intertwined and how every decision we make impacts someone else.  After reading the book it made me wonder about all the chain reaction blessings that have happened, just because our lives took a turn down a road we would have never chosen.  I can see so many blessings... I wonder how many I won't ever know of? 

This is the thought that keeps me going.  

Knowing that there is someone much bigger than me at work, whose mind I will never know, keeps me from getting consumed by sadness and self-pity. 

It also makes me thankful that I don't know God's mind and what lies ahead.  I am just called to trust that whatever detour we may take, our final destination remains the same, and that God himself will get us there.

Jeremiah 29:11  (NIV)
    "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."

*******

I want to leave you with a picture depicting the joy that came with a generous gift given to our family.  Webster Electric received four St. Louis Cardinals tickets for the Monday, June 1st game.  Instead of raffling them off, or having a drawing, the employees decided to give them to us.... or, more specifically, the kids.



My initial plan was to have someone take them while I stayed with Steven.  The kids, however, begged me to go with them and Steven was determined that I do just that.  So, with my cousin Julie joining us, my kids experienced their first Cardinals ballgame.

Blake was in heaven, and Lakyn wouldn't take her eyes off the field for fear of missing something. 

Once during the game, a foul ball barely missed my outstretched hand (I was too slow to realize what was happening and actually stand up), and bounced off the hand of the gentleman behind me.  Blake, having already formulated a plan if a foul ball opportunity presented itself, was completely disgusted with himself for being so "distracted" by his cotton candy that he failed to carry out his plan of taking off his cap and snagging the ball out of mid-air.

He soothed his pain by eating more cotton candy.

Again, thank you to all of you who have made life with leukemia, and life away from home, much less bleak.  The joy on the kid's faces was so good for this momma to see and the best medicine I have received in quite a while.

Sunday, May 24, 2015

Heavy Hearts

This has been a tough ten days.  Make that 11. 

Steven went to the ER last Thursday because of a fever.  I woke up next to him in bed, feeling the heat radiate off of him.  My first thought was an infection.

So was the doctor's.

However, in Springfield, the doctor wasn't familiar with the regimine, and expectations for someone following a stem cell transplant. After determining his kidney function was off, and believing it to be a kidney infection, he mentioned, almost in passing, that there were immature cells and blasts in his blood.  He even stated, "that's probably expected, right, with what you've been through?"

I knew it wasn't, and the life drained from my body.  

After a frantic 8 am call to Dr. Jacoby in St. Louis, she herself called me back and spoke with me.  

Steven would be taken by ambulance to St. Louis and tested further and treated.  

****

By the weekend it was determined by a bone marrow biopsy that the leukemia was back and 50% of his marrow consisted of blasts.

Chemo started two days later.

So, today, I find myself back in a hospital room, watching my husband fight, but without the vigor he had before.  The strength of his body had been reduced considerably after the last transplant, and now, adding more chemo and knowing there is another transplant on the horizon is frightening.  

My heart is also heavy with the knowledge of what this does to our kids. Last night, in a moment of honesty, Blake started crying for the first time since learning that his daddy's cancer was back.  

"I just want to go home.  I don't like St. Louis.", he said.  

I held back tears but my mind was screaming it's agreement. 

I told Blake that he had family back at home and they would love to see him and that he could go home at any time. One look at his face and I knew that "wanting to go home" was more about going back to a time before he had the knowledge, or fear, that his life now holds, and less about a location.

*****

I took an opportunity and gave the kids a pep talk, which was as much for me as it was for them.

I reminded them of everyone that loves them.  I reminded them that God was in control and that all things would work for His good...whether we could see it or not, and I reminded them that we were a family and that we were in this together.

They were not alone and they never would be.

That was my vow.  Regardless of what happens, THEY will NEVER be alone.

****

So today, as I sit in this hospital room, I listen as the kids make and race paper airplanes.  They sound happy.

I look at the wall and see pictures that they have drawn reminding their daddy how tough he is, and to cheer him on. I smile at their use of the word "ain't", a word they know I detest and a word they think solidifies their "country-ness" in this big city.



And I use these things to remind myself that life goes on.  Even if "life" looks a lot like the inside of a hospital room.

****

Please continue to pray for our family.  This is such a rough road, and it's rougher each time we go down it.  The disease has shown it's persistence and one transplant has already failed.  

You can't have unlimited transplants.  

The doctor mentioned that she believed, that this facility had done three transplants at least once before and that not many people can physically handle it, so it's generally not an option.  And I don't know whether it's one we would even be given.

This transplant has to work.

Please pray.

Also, my family has experienced another loss, and I am the only one who knows at this point.

Rowdy, Steven's beloved dog and long time companion, passed away Friday night on our front porch.  My cousin found him Saturday morning.  

He had lived a long life; Our kids have never known life without Rowdy.

Although he had began showing his age, he was still very active. I can't help but think that Steven's absence played a part.  



Rowdy's heart, like my own, was heavy.  

So, as I sit in this hospital room, and watch the kids throw paper planes at each other, I try and think about when, and how, I can possibly tell Steven and the kids, that Rowdy won't be waiting for us at the end of the drive when we get back home. 



Friday, May 01, 2015

Weekly labs and daily prayers

Tuesday we made our way back to St. Louis for Steven's monthly check up.  I was relieved at the timing of this visit, since he had been battling nausea and vomiting the week before. 

Prior to our visit the doctor had suggested eliminating the high dose Vitamin D from his daily line up of meds, as well as bumping his prednisone dosage back up to 10 mg to see if he improved. 

He did.

I held on to the hope that it was either the Vitamin D that was the culprit, or a fleeting virus, because the thought of tapering the prednisone back down had me in tears.  We had made it to 3mg and I thought I could see the light at the end of the tunnel.

I was wrong.

At his visit on Tuesday, when comparing the lab work from the previous week to the labs taken that day, a prior spike in his eosinophils, followed by a dip in his platelets, pointed to a flare up of Graft VS Host Disease. 

The physician decided to start gradually tapering off of the prednisone (again), in the hopes that by the time we reach the 3-4mg level, Jammie's cells will have calmed down a little and Steven's stomach will be able to handle the adjustment more smoothly this time around.

*****

I took the opportunity Tuesday to ask the physician about the role that the chromosomal rearrangement played in the stem cell transplant, and if the hope was that the mutation would also be prevented by the procedure.

In short, the answer is yes.

However, the discussion lead to me leaving the office with a heaviness in my heart.  You see, as I have mentioned before, with each bone marrow biopsy we are given three pieces of information.  We are told whether or not there is "active disease" (cancer), how much of the marrow is donor engraphed (we pray for 100%), and if the genetic mutation, and chromosomal rearrangement, is present.

Since transplant, we have always received the best news on all three.

I knew the importance of being free of cancer, as well as the importance of being fully donor engraphed.  However, although I knew that not having evidence of the chromosomal rearrangement was HUGE, I didn't know if the rearrangement was something that we should expect to see again, or if the thought was that the transplant would take care of it.

What I found out is that the study searching for the mutation is more sensitive than the study searching for the cancer.  Steven could, essentially, be free of cancer, but have the rearrangement (Inversion 3) present.  If that was the case, the rearrangement is basically indicating that it will be developing into cancer.  It is cancer at it's earliest stage...before it is even classified as "active disease". 

The hope is that Jammie's cells will recognize the foreign cells and prevent their return.  Even cells that aren't fully cancer yet. It has been the purpose of the transplant all along, and I now had a greater understanding of it.

However, it was the physician's demeanor, once again, that set me on edge.  In speaking with her, I could not help but pick up on the fact that she didn't seem very optimistic about the transplant doing it's job.  It wasn't what she said, as much as her avoidance of saying what I wanted to hear.

She did not put her negativity into words, and I have to focus on that.

She stated that, if the mutation became evident, there were avenues to take before the transplant would be considered unsuccessful, and I have to focus on that.

And, as of today, day +142, we have had nothing but good reports, and good news...and I HAVE to focus on that.

It is a constant battle and I find my mind shifting from today, towards the future.  When I look ahead, all I see is uncertainty.  When I look ahead, I am consumed with fear, and "what ifs?".  When I look ahead I wonder how, if I had to, would I make it on my own?  What about the kids?  Will we end up alone?

 And all the questions bouncing around inside my mind makes me, literally, sick.

I hate the way my mind works.

I have been reminded by many, although I am already very aware, that none of us are guaranteed a future.  Steven doesn't have this market cornered.  My occupation alone keeps me aware of our mortality.  However, I have been holding my breath since September, waiting for someone to tell me that it is all going to be ok, and that Steven's future holds no more risk than anyone else's.... and that isn't going to happen.  They can't tell me that.  And I am getting light headed and weary from not being able to breathe.

No one knows what the future holds.  Only God.  And I have to make peace with that.

*****

As I laid in bed beside Steven last night, despite my best efforts to keep my emotions in check, tears rolled down my cheeks.  He gathered me up to him and comforted me and I felt guilt that I was being comforted by the one I should be comforting, and anguish at the reminder of all I had to lose.  He whispered, "I thought we were past all this...", and I knew that I must have been doing a better job of hiding the anxiety that is always present than I had thought.  With bravery that I don't have, and bravery I can't imagine, he reminded me of the marvels of modern medicine, and the miracle of how far he had came.  He also gently reminded me that worrying didn't solve a thing and God was always in control.

And he is right.  And I pray for the day that I can get "past all this..." and I can start living this life that I have been given.


*****

Steven was due to have another biopsy around the +180 mark.  The doctor said two weeks wouldn't make a difference, and in order to save us a trip, they scheduled his next biopsy on the same day as our next appointment in St. Louis, in a month.  Until then, we will continue with weekly labs and daily prayers.

We always appreciate your prayers as well.

Monday, April 13, 2015

Runaway

I knew that it had reached another level when I found myself googling "SCT support groups" in an effort to find other care givers.   I had a deep seated need to be given hope that things, specifically Steven's mood swings, would get better and to verify that it really wasn't just me. 

I know they have to.  Common sense tells me that.

I have seen the struggle he went through.  I was at his bedside for months and know the very real effects of cancer and the treatments for it.  I sort his pills into the weekly organizer, keeping track of the medicines he needs to continue on his journey.  I know that the fatigue, the chemicals, the medicine, the prednisone, play a very real part in his psychological state.


I also know that because I have been there since the beginning, and will continue to be there until the very end, I get to be the one on the receiving end of his frustrations. 

And I do believe that the heightened frustration will end. Eventually.

However, after the days turned into weeks, and the weeks turned into months, my mind became weary.  Sleep was no longer something I did after a long day, it was a welcome refuge.  Time spent alone was, and is, basically unheard of, aside from the 15 minute commute to and from work and the constant tip-toeing around the elephant in the room was exhausting.

*****

I wondered, at 38, if running away from home was an option.  I envisioned myself with a handkerchief tied to a stick, walking down the gravel road in front of our house, singing with as much soul as this girl could muster, "Nobody knows the trouble I've seen...Nobody knows my sorrow."

Oh. How. I. Kid. 

It's funny to even think about ME running away. Primarily because I would worry too much if I did, and the control freak in me wouldn't have it.  And, I don't think I have a handkerchief large enough to carry all my hair care supplies. 

Yet, here I am, with a large part of me that is, at times, just doneDone.

However, being done is a luxury I don't have.  Few of us do.

At one particular low point, I remember a text conversation with one of my friends.  I can't remember exactly what I wrote, but upon re-reading it, I realized it reeked of desperation. 

I hate sounding desperate.

I texted back and clarified that I was ok, I wasn't teetering on the edge of sanity, BUT I wouldn't be particularly distraught if a car just happened to run me over.

And, honestly, that is how I feel most days.

There are moments when I get a glimpse of the "old Steven".  Sometimes I even get days with him.  But then, out of the blue, the angst returns.  I am sure the constant dropping of prednisone levels plays a role in the roller coaster ride we are currently on, as does, I believe, the mental toll of the new challenges he currently is facing.  Taking it easy, isn't in his nature, or vocabulary...but he is learning.

As am I.

I try to take every opportunity to laugh that I can.  And I savor it.

And we all should.

****

I wasn't going to even write about this rough part of the recovery process, and the constant aggravation that has arose inside Steven on the heels of the transplant, but then I realized how hypocritical that was.  Here I was, googling to see if anyone could relate to my current situation, only to realize that if someone stumbled upon this, the written chronicle of our journey, they would never know that their struggle is real. And shared. Painting a picture comprised of rainbows and butterflies makes my story one that is not relatable.  

It took a conversation with a long-time friend to reveal to me that so many, when caring for someone with a life-altering illness, find themselves on the receiving end of a lot of frustration, tension, and anger about the situation.  My friend shared experiences she had with her mother and the hurtful words her mother would say when in the midst or her own battle (with the help of prednisone).  My friend would go home and cry in the shower so that no one would know the extent of the hurt it caused her.

Her story gave me hope, and comfort in the fact that I wasn't alone, and that maybe, just maybe, it wasn't just me.  As I well know, the hurt inflicted is real, even when you know the cause.

I have had many people stop me and say how they appreciate how honest I have been when posting things, and each time I respond with "You will never know what never makes it onto the blog".  And it's true.  Even sharing this post, I have stopped short of revealing specifics, or the depth of some of the trials.

I don't want to taint, or shape, anyone's opinion of us, as people, and a couple, especially at this most difficult time in our lives.  We are so much more than this.  We are so much more than cancer.

I have had many people say, "I bet you guys have been brought even closer through all this, and love each other even more."  And the answer is yes. Yes. And yes.

But, it isn't all roses, and it isn't all warm and fuzzy.   

We laugh when we can.  We stay silent when it's needed. And we forgive.

And, of course, we love always...


Knowing what we've faced, and what we will continue to face, together, makes times like these, and the smell of the lilacs he picked just for me, all the more sweet.










Monday, March 23, 2015

Quite a process

The last few months I have given many people highlights of the process that Steven is going through and what the transplant, and subsequent treatments, consist of.  Obviously, my understanding of everything is limited, but is enough information to get the idea of what is taking place.  I thought, that maybe, I would try to explain that here.

When Steven was diagnosed with leukemia it was the appearance of excess blasts, or immature cells, in his blood that clued the doctors in.  The presence of the cancer was keeping the cells from maturing and doing their job.  In fact, a few weeks prior to finding out the news, Steven actually went to the doctor because a burn on his hand had become severely infected, and resulted in inflammation and swelling to the point that he couldn't bend his fingers.  The doctor prescribed an antibiotic and the burn healed and we were none the wiser. 

Looking back, it was obvious that the healthy cells were being taken over at this time by the cancer, and the new, immature cells were unable to adequately fight the infection that was brewing in his burn.

Steven had also been blaming a cold for causing him to feel short of breath.  However, when his stamina was significantly reduced, and he had to take breaks when carrying gates, he knew something was wrong. 

We now know that the red blood cells that carry oxygen to his organs were being compromised.

At the time, we had no idea what the real culprit was.

****

Leukemia is cancer in the blood.  That much most people know.  Bone marrow, which is located inside of your bones, is what produces the blood in your body.  (I didn't even know that much seven months ago.)

Stem cells, located in the marrow, are what produces the cells that make up our blood.


The chemo that Steven received in September was meant to rid Steven's marrow of the leukemia, and the defect that was producing the cancer.  However, because of the bad cytogenics, Steven's doctor knew that although he could get him into remission, the cancer would return.  It was for this reason that a stem cell transplant would be required in an attempt to save Steven's life.


In St. Louis we found that the first round of chemo did not get rid of the cancer.  Although the chemo initially cleared the marrow, when the marrow rebounded, it rebounded with the cancer intact.

At that time, a more aggressive round of chemo was prescribed, and thankfully, it stalled the cancer long enough for us to return on December 1st, to receive the chemo that would prepare his marrow for the stem cell transplant.  It was, obviously, more favorable to go into a transplant with no signs of disease (cancer) so that the new cells wouldn't have to immediately go to work.

The chemo in December wiped Steven's marrow clean in hopes that Jammie's stem cells would immediately take up residence and make themselves at home.

During the period surrounding the transplant, the doctor made it known that any cells counts that the doctors were reporting were not Steven's own.  The blood he had in his body was blood that came from somewhere else...specifically, a transfusion.  His red blood cell count was, at that point, comprised solely of transfused blood and he received several blood and platelet transfusions while inpatient. 

What I didn't understand until being in this situation is that the white blood cells are not part of those transfusions.  If I would have stopped to think about it, I guess it would have made sense.  White blood cells are our own personal immune system.  Putting someone else's in our body would be a recipe for disaster...at least, it would be in a normal situation.

*****

Two days after Steven finished chemo, his marrow was, essentially, "blank".  At this time he received the stem cells from Jammie.  The stem cells were fed through a catheter in his chest and, because they are really smart cells, they knew what their job was:  to find their way to the marrow and to start producing blood.

As I mentioned before, stem cells produce blood, and blood is comprised of white blood cells...which is our immune system. 

The risk at hand was that once the cells start doing their job, the white blood cells, which are being produced by Jammie's stem cells, would recognize that they were not in Jammie's body and begin doing their job, which is attacking all things foreign.  Steven, which is made up of foreign cells, would be one of those foreign "things".

The matching process finds a person that has a similar genetic make-up, in hopes of lessening the amount of "attacking" that goes on, which in technical terms is called GVHD (Graft Vs. Host Disease).

Steven was attacked by Jammie's cells on a low level, and, thankfully, has never reached anything near the life-threatening degree.  The rash we all prayed for was a low-level sign of the GVHD.  The reason that this was a good thing is that, although the rash was uncomfortable, it showed that Jammie's immune system was working...even though it wasn't in Jammie's body. 

And, Jammie's cells were still fighting even though they were being suppressed by drugs.  (This suppression is to keep Jammie's cells from seriously attacking Steven's body until it makes itself at home.  We want to keep the life threatening effects of GVHD at bay.)

The thought is that a new, working immune system should recognize the cancer as foreign, long after the new cells have made their peace with Steven's body and no longer view him as foreign.

*****

We have been told that the marrow has to be "babied" along for the first year.  It is temperamental.  It is new.  Steven's marrow had originally been occupied for 41 years by his own stem cells.  They might not like being thrown out and might eventually try to crash the new stem cells' party.

This is the reason for the many bone marrow biopsies that will take place this first year. 





During the bone marrow biopsy they insert a "needle" (I use that term loosely.  It looks much more substantial than any other needle I have ever seen.)  into Steven's hip bone.  Once they are able to penetrate the outer layer of the bone and make it into the marrow, they suction out (aspirate) the inner cells.  After getting the required amount, they then measure how much of the marrow is in the hollow of the needle and then pull out a portion of the bone itself.

These things are all sent out to be tested.  This test shows many things but there are three things that we wait anxiously for:

  • to find if there is any "disease" (cancer) present
  • to find whether or not the marrow is still totally engraphed with Jammie's cells
  • to see if the genetic marker (the one that drives the cancer) is present
This past Friday we found that there was no disease, the marrow WAS totally engrafted, and the genetic marker, still wasn't present.

We couldn't have asked for better news.  It has answered so many prayers.  However, we know that even though it is 100% engrafted now, Steven's cells could still try to take over.  (We don't want that.  Steven's cells apparently invite cancer to the party.)  We know that although the cancer is not there, it could decide to come back.  We know that the absence of the genetic marker is HUGE, however tomorrow is another day.

BUT, we also know that God has brought us this far, and by His mercy and your prayers, we have made it 100 days cancer free.

I pray that Steven can soon come off of his immune suppressants and that Jammie's cells aren't too upset about their new home.  I am ready to let them go full force against anything that would try to harm my husband.  They've already proved their tough by remaining totally engrafted, even while being pulled down by drugs, and I can only imagine what greatness those cells have in store when they are allowed to come fully armed into the fight.

Please continue praying for us all.