My Caregiver

As we sat on the porch and then took our regular walk around the pond, our conversation focused on an aspect of my disease that I haven’t spoken of here.  My caregiver.  Paul also reminded me that besides translating medical jargon and giving donor updates, my blog is an expression of my thoughts and feelings.  So today’s post might be a bit personal for some, but this is what is on my mind.

While Paul is probably the most well studied of us all in this journey of ours, he has not found the words to write about his feelings as a caregiver.  By nature, he is one who carries the weight of responsibility squarely on his shoulders.  In our marriage, he is a selfless giver, he is endlessly patient, completely loving, and ignores his own pain and needs and focuses only on mine.  I don’t deserve this…. 

The role of caregiver is adding a whole new dimension to his already sacrificing character.  In addition to maintaining his responsibilities at work, as caregiver he is charged with:

 
                ·  Providing emotional support

·  Providing physical care during and
   after hospitalization

·  Caring for the central line (catheter)

·  Helping with administration of oral
   medications

·  Recording the medications taken

·  Giving intravenous fluids and
   medications using a pump device

·  Identifying changes in my condition

·  Obtaining medical care if needed (ie. driving like a crazy man back down to
   MD Anderson!)

·  Reporting symptoms to health care staff (every little one is important!)

·  Gathering information (which he has done immensely!)

·  Keeping family members and friends up-to-date about my condition

·  Monitoring the number of visitors (and making sure they are not sick.)

·  Maintaining a clean home environment after hospitalization

·  Preparing food (based on the recommended diet given by the MD Anderson staff.)

·  Providing transportation to and from the hospital for follow-up care  (This one alone
   includes 100 days (post-hospital stay) of ambulatory care, not to mention the weeks
   preceding the transplant for front-line treatments 3 times per week, and 30-40 days
   IN the hospital, having to drive back and forth.)

·  And making me behave!  (This one is particularly difficult...well, you know me!)

Paul has never been one to ask for help.  However, in this case, he knows beyond a shadow of a doubt that he cannot do this alone.  My mother is in line as the back-up quarterback.  But at almost 80 and with her own health issues, he is concerned as to how well she will hold up to the pressure…not only the pressure of the schedule, but the pressure of seeing her baby sick.  In all ways, God provides.  We know He will in this area as well. 

Paul takes all his roles very seriously.  Whether as a husband, a father, an employee, a friend, or now as a caregiver, he is one who gives, who listens, who is diligent, patient and kind…punctuated with that dry sense of humor.  He is quiet and unassuming.  He is confident but not haughty.  He’s funny but not silly.  And he lets me know every single day how very much he loves me. 

He has always been this way.  It is rare to find these types of qualities in a teenager, but this is how I have always known him to be. 

While he finds it difficult to put this in writing, he is afraid.  We both are.  He has been frustrated since first diagnosis that he can’t fix this.  He SO wanted to be my bone marrow match.  It broke his heart that he wasn’t.  He already IS my hero.  He doesn’t have to be my HLA match for that.  He doesn't want to make a costly mistake.  He doesn't want to miss anything.  He puts an inordinate amount of responsibility upon himself.  Neither of us is willing to do anything less than absolutely everything we can to beat this thing.

Every day that we read another article, another blog, we are reminded that this 17p deletion is the only prognostic factor in CLL that bears the term “ultra” high risk.  This transplant is my only shot, other than a good old-fashioned miracle.  Chemo will not work for me.  The role of Campath is only to get me into remission long enough to get to the transplant. 

While we do not spend our days lamenting the fact that I have a terminal disease, it is there in the back of our minds trying to steal our future.  We do not intend to let it.  Not as much as we are able, and with the grace of God. 

As most of us travel through life in the fast lane, this journey takes us on a more scenic route.  You tend to slow down and look at the beauty around you.  You don’t want to miss what’s coming around the next curve.  You put the top down and feel the breeze in your face, the warmth of the sun.  Its rays pierce through the clouds like He pierces His hope into the cloudiness of our souls. 

My caregiver needs as much prayer as I do.  Maybe more.  I just have to do what I’m told.  He has to carry the weight of our world on his shoulders.  May God, and others close to us, hold him up.  Psalm 68:19 “Praise be to the Lord, to God our Savior, who daily bears our burdens.”  Galatians 6:2  “Carry each other’s burdens, and in this way you will fulfill the law of Christ.” 

From the first time I saw you until the day I breathe my last, all my love to you…my caregiver, my sweet husband, my Paul. 

The first time ever I saw your face
I thought the sun rose in your eyes
And the moon and stars were the gifts you gave
To the dark and the empty skies, my love,
To the dark and the empty skies.

The first time ever I kissed your mouth
And felt your heart beat close to mine
Like the trembling heart of a captive bird
That was there at my command, my love
That was there at my command.

And the first time ever I lay with you
I felt your heart so close to mine
And I knew our joy would fill the earth
And last till the end of time my love
It would last till the end of time my love

The first time ever I saw your face, your face,
your face, your face