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 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.


Manda said...

There are so many feelings and things to process from this blog....but I cannot get past the Oriental Inn part. This is shocking to me beyond jaw dropped. How did I not know this? How have we let this happen...? :) lol. Happy Anniversary and many prayers. Oriental Inn next week...

psmith2026 said...

I'm so happy you're home. Prayers are coming as always. No matter what happens I want you to still enjoy these days. Pick out good things, like you did here, every day and put them on a calendar or just in your head. To look back at the days and see the those little things helps so much. I hope you are taking time for yourself to talk with a support group or counselor. You may feel you don't need it deserve it, that little time for you can help so much. Thank you for sharing Steven's progress. I'm glad he's doing so well . I know sharing helps you too. You're the fixer for the family. Take a little time for yourself. Love, Patty