Wednesday, February 18, 2015

Newlywed Bliss

Ash Wednesday, and going to Mass, has been something that I remember doing as far back as I can remember.  I am sure there were a few times I failed to go, but all in all, it was a tradition...and an obligation.

In fact, I think that most of my life I didn't even look too deeply into why we "gave something up", and had ashes put on our foreheads.  We just did.  I knew that the priest used ashes from burned palms from the previous year's Palm Sunday and reminded us that we were "dust and to dust we shall return".  Of course, the older I got, the more I took from each service.  However, there was one Ash Wednesday service that made more sense to me than any other I had been to.  The homily was given by a substitute priest, and I have thought about it every Ash Wednesday since. 

In essence, the priest spoke about a newly wedded couple and their honeymoon. 

Odd, huh?

Stay with me.

He mentioned that most newlyweds were excited about their life together and that the honeymoon was a period of time that they spent together, strengthening their bond and drawing closer to each other, before they returned to the distractions that life inevitably provides.

Most newlyweds are so excited, in fact, that they drive off into the "sunset" with a decorated car, a  "Just Married" sign and cans hanging off the car bumper.  Everyone they pass on the road knows that this couple is in love, and that they were headed toward a time and place where they would celebrate their union and focus solely on each other for a while. 

I know that when I witness those newlyweds, so in love, riding in the gaudily decorated car, I take note, and smile, and think of my own relationship.  My own love.

Something else?

Generally newlywed couples pack lightly.  You don't see them loading up every single wedding gift, and bringing along extra "stuff" from their house.  It's their honeymoon.  They don't take with them a U Haul trailer loaded down with everything they owned. 

Those distractions aren't necessary.

This time is about them. The gifts, distractions, and "stuff", would be waiting for them when they returned from their honeymoon.  They didn't need them now.


So, how does this relate to Ash Wednesday?  You might have already drawn the correlation.

The newlyweds?  You and God

The honeymoon?  Lent

The ashes on your forehead?  The "Just Married" sign and cans hanging off your bumper....allowing those around you to pause and give thought to their relationship with God.

The "giving something up"? he mentioned, you pack light while on your honeymoon.  It's a time to be devoted to each other

The priest's homily, and the real-life correlation he drew, has been something that I have thought about yearly since hearing it.

His message makes sense to me, and enables me to realize that I need to be excited about the "stuff" I decide to shed during this time.  (Although, sometimes, when I have a caffeine headache because I gave up soda, it's hard to be excited.  The struggle is real, right?  Just kidding..... Kind of.) 

Of course, as I reminded the kids, you don't have to necessarily give up something.  You can always do something.  Something that will remind you, daily, that Jesus gave up, and did, much, much, much more.

Much more.


I need to add a disclaimer that I know that I haven't done justice to explain the sacredness of this time.  My hope, though, is that in sharing the homily, I helped to make it less foreign, and more relatable.  I know it did that for me.

This is a link to another article I saw circulating that helped to cast a different light on the Ash Wednesday tradition.  It was informative and enlightening as well.

Happy Ash Wednesday everyone!

Monday, February 16, 2015


Since being home it has been harder to keep Steven from over doing it, and from pushing himself too hard.  I am ever so thankful that simply being in his home environment has seemed to give him strength, but I wish he would take heart the words of the doctor AND take caution.  I find myself reminding him of the complexities of his position daily.  You see, he feels well.  And since he feels well, it is hard to believe he isn't well.  It is even harder on him when others, blind to the medical miracle taking place in his body, ask if (or when) he is (or will be) back to work.

Steven is the hardest worker I know.  I've said it before and I would meet head on anyone who challenged that.  Sitting still is foreign to him and I know, only because he has had ample time to think about how quickly our time on earth can end, that the only thing holding him back is the knowledge of what a risk it would be to his health right now.

I explained earlier on Facebook a few of the complexities of the bone marrow stem cell transplant procedure.  During this process, one thing my eyes have been opened to is how AMAZINGLY incredible our bodies are. The picture of the actual transplant made it all look so easy. Simple, in fact, but what was happening was anything but. You see, Jammie and Steven had the same blood type, but that was not a requirement to be a donor match. For those who receive stem cells from a donor with a different blood type....their blood type will change. CHANGE!!! I never even knew that was possible.  A person could go into transplant with one blood type and a few days afterwards, be a totally different blood type. Who knew our bodies were capable of this? Who was smart enough to figure out how to detect and monitor this? How complex and thorough was God in designing our body?

Also, Steven is now considered a "newborn". In fact, the nurses joked that December 9th was his new birthday. He is new. So new, in fact, that in a year he will have to receive his childhood immunizations again.

Although no longer in the hospital, the transplant procedure is, in a way, still ongoing.  Jammie's immune system has now taken up residence in Steven's body thanks to the transplant.   This is what we wanted and a blood test a few weeks ago showed that Steven is now making 100% of Jammie's cells. 

Steven's bone marrow has been overthrown and Jammie's stem cells have set up shop and have taken over production. 

This is good.

However, as I stated before, the process isn't actually as easy as all that.  Jammie's immune system spent 44 years in Jammie's body identifying and destroying anything that was foreign.  This is what kept him healthy.  Your immune system, when working properly, does the same for you.

From attacking a cold virus, or bacteria that seeps into a paper cut, or mold spores that rise up into the air when you dig in the dirt and enter your lungs when you breathe,  your immune system is there, keeping you well and keeping infection at bay.

But Steven's, technically Jammie's, isn't able to protect Steven from those things...yet.


Well, because Jammie has a healthy immune system and that system has fine tuned it's ability to recognize all things "foreign", it is now recognizing that it is not in it's old, familiar home:  Jammie's body.  The surroundings are similar to those it resided in for 44 years, (Jammie and Steven were a 6/6 match), but not identical.  For this reason the immune system is aggravated, and irritated, and trying to keep Jammie healthy.  (Yeah, they haven't realized it's Steven yet.  Soon, though.)  The immune system is all riled up and attacking Steven's skin cells.  Skin cells are quick to divide and multiply and that seemed like a threat.  So...they attack them.  Hence, the rash.  Also, your stomach has rapidly dividing cells and Jammie's immune system wanted to make sure it kept those in check, so it attacked Steven's.  Hence, random vomiting.  Also, the liver seems to be taking a hit, therefore Steven had elevated liver enzymes.  These are all signs of Graft Vs. Host Disease and the spectrum of severity is broad.

However, you should know that all of the above symptoms have happened while Steven was taking immunosuppressants, which are drugs whose main purpose is to keep the immune system pushed way down.  Thankfully, none of his reactions have been life threatening, but, rather, a sign that even while suppressed, Jammie's immune system is fully functioning.  However, if not suppressed until it becomes "familiar" with it's new surroundings, Jammie's immune system could be fatal to Steven, attacking systems and organs that are vital to Steven's survival.

We are so very thankful, though, for the signs that Jammie's immune system is working.  It is so very important because, IF the cancer returns, and the doctors seemed to believe it would, Jammie's immune system would, most likely, recognize IT as foreign and attack it as well.  This is the whole reason that we have taken this chance.  It is our only hope.  Although science is continually evolving, right now, this is the only effective way to treat Steven's form of leukemia.  And it isn't guaranteed.

But it has given us hope.

Unfortunately, like most things, there are risks.  One physician stated about the transplant, "it has the biggest risk...but the biggest potential reward".

That is what we are keeping our eyes on.  The reward. 

I know all too well that the reward isn't guaranteed.  I spoke with, and was familiar with, three families whose loved ones did not make it off of the 5th floor of the hospital while Steven was hospitalized in December.  Two never made it out after transplant and one succumbed to Graft Vs. Host Disease.

So you see, we aren't out of the woods.  We are getting closer each day, but until the immunosuppressants are eliminated, Steven has no protection from simple, day to day, infections that we don't even think about.  The doctors have given him permission to be in public and to use common sense.  However, they have not given him permission to go back to work, a job in which he digs, welds, and works with barbed-wire; a job which opens Steven up to a whole other host of threats that can be avoided by simply waiting until his body is ready.

Most people are kept nearby the hospital because of the increased risk of infection until day 100.  Steven was an exception, but he is not an exception to the risk.  He has the responsibility of always keeping an eye on the risks around him.  Hopefully, near the 100 day mark, which is mid to late March, Steven will be able to come off of the suppressants and get a little closer to normal.  I have heard, though, that his new immune system could take up to two years to be fully functioning again.

We will gladly wait two years.  We will wait a lifetime, if need be,...all while praying it is a long one.

Friday, February 13, 2015

Growing accustomed

As you know, we are home.


Something that I took for granted so many times before.  Absence from home, and all the security that home and community provides, was something I had never really experienced before.  I liked home.  My kids liked being home.


While in St. Louis, spending months away from our house, we knew we weren't at home.  The differences in the environment were, obviously, astounding.  Our kids weren't with us during the week.  We lived in a hospital.  We lived in a duplex.  I had to parallel park in front of our house, when I wasn't parking in a dark parking garage.  We heard sirens night and day (and we were in a quiet neighborhood.)  We didn't ever have complete darkness at night because of all the streetlights.  We never saw familiar faces at the grocery store.  We were alone in a way we hadn't ever been before.  We were alone together.

However, as people do, we became accustomed to our new living arrangements.  Although we never preferred that duplex, or that town, we did find ourselves referring to it as home.  "We're headed back home..."  "We left the medicine at home."  "I'll fix supper when we get home."


While in St. Louis, Steven and I relied on ourselves.  And our faith.  It was primarily the two of us, 24/7, with only a few exceptions, other than when the kids came on the weekends.  It was so much different than our lives "before leukemia" where we both went to work, and met other demands of our schedules.   And, like our living arrangements, we became accustomed to it.

And now we are home.


Steven joked before leaving St. Louis that he was like a prisoner and that when he got "out", he might not be able to make it in the real world.  I had a sneaking suspicion that he would make it just fine.

What I didn't expect was my own issues adjusting.


Having the kids home has been great and the transition felt as if there really wasn't even one.  We picked up right where we left off and it felt so good.  So...normal.

I have dreaded going into public because I felt odd, and...suspicious.  It sounds stupid, and I apologize.  I know it is the anxiety talking. However, I worried about people looking at me, and me not being able to recognize the part that they have played in supporting us.  So many people have came together and prayed, and offered help, and kind words, and many of those people I don't really know. 

And...that bothers me.

I meet someone's eyes and don't want to draw attention to myself, and our situation, by explaining my predicament, yet I wonder if I owe them a "thank you", or if they were someone that I have "spoke" to in a Facebook message, sharing parts of our lives and encouragement. I don't want to appear ungrateful, or stand-offish, and I do want to give back all the love that has been shown, but, sometimes I just want to be invisible because I don't really know what I should do.

Looking back, it now makes me laugh when I think about my self-proclaimed "Facebook rule" that I enforced years ago.  I had a strict policy of only friending people that I actually knew, and would actively speak to if I met up with them in Wal-Mart.  If you asked, and I accepted, and you didn't speak to me, or at least acknowledge me with a nod, or a wave in public, then I defriended you.  I figured if you didn't actually want to be my friend, then you didn't need to be my "friend".

Now, in the light of the last five months, I recognize the change in me, and my "Facebook rule".  I have had so many people reach out to me by requesting to be "friends".  I know many of these people don't know me, but may know of Steven and his situation.  I accepted their request and viewed it as a way to petition for prayers that we were, and still are, desperate for.  The irony of the situation is that I am now the one that doesn't acknowledge them because I don't even know who they are.  And this bothers me and I want to apologize.


Since being home I have also found that I now have anxiety when I am not with Steven.  He has had a few well deserved opportunities to go with relatives and friends to do various things.  He should do those things and enjoy his life and the relationships he has with those in it. 

However, after being with him, almost constantly for the last five months, I was at a loss.  I knew that being with him did not prevent anything from happening to him, because those things are not in my control.  However, my mind believes that if I can see him...then I know he is ok, and I don't have to worry about all the "what ifs".

I am gradually starting to cope with this and become more accustomed to it. 

(I am sure Steven is thankful for this.) 


One thing I hope does not happen is growing accustomed to the fast pace that life seems to throw at us.  While in St. Louis, prayer and contemplation was something that we had plenty of time for.  Now that we have more responsibilities, I don't want to lose sight of what, and Who, has gotten us this far.  I don't know how we could lose sight of it, when I think of what we have been through, but I do know that the world has a way of sucking you in and filling up your time with all the things that it wants you to believe is important. 

Let me tell you this, those "things" aren't important.

Faith. Family. Friends. Community. 

Those are the things that I want to fill my life up with.  Those are the very things that give life LIFE. 

Trust me.  I've been to the bottom, and I looked around.  This world is fleeting.  It fades away in the blink of an eye.

Don't grow accustomed to it.

After all, it isn't our home.

Happy (early) Valentine's Day!