On Caregiving

             Most, if not all, of us, when confronted with a medical condition in a loved one want to know what we can do to fix it.  We don’t like to see someone else have to endure pain and discomfort or grueling treatments or remedies.  We want to know exactly what it is that we can DO to make things better.  More often than not, there is nothing we can DO to make things better and that makes us frustrated because of perceived ineffectiveness.

            So, how do we navigate the times we may find ourselves in the role of a caregiver?

            For one, the caregiver must realize the importance they play in the day to day life of the patient.  At the Hope Lodge, each patient is strongly encouraged to have a caregiver with them at all times during their treatment and time spent at the lodge.  It’s not mandatory, but it is highly recommended as the lodge does not provide 24 hour cares.  The caregiver is there to attend to the physical, mental and spiritual needs of the patient. 

            And, it certainly doesn’t need to be much.  Many are the times when simply a touch from someone is all that’s required to soothe a particularly rough day.  Just knowing that someone is there is blessedly comforting.  And, there is healing in the physical touch provided from one individual to another.

            When faced with the challenges of life-threatening disease the burden upon the mind can be overwhelming.  The care-giver serves as a companion to listen to the thoughts and feelings expressed and to offer comfort through reassuring words.

            Don’t forget caregivers; during this journey, you have to take time for yourself.  You will feel drained.  What you are going through is physically, emotionally and spiritually draining and you will feel it.  You must recognize your own limitations and be prepared to seek respite when the time is right.  And you know what?  It’s okay to say I recognize my limits.  It’s not just okay, it’s required.  If you don’t recognize your own limitations, it can impact the care and well-being of the patient.

            And don’t forget to pray.  If you’re inclined to pray out loud, do so.  The patient will draw solace from your words.  But even if you don’t pray out loud, pray nonetheless.  It makes a world of difference.

            So, although we cannot DO anything to make the patient well, there are myriad ways we can serve the patient and things that we can DO to make the journey tolerable.  It is in that doing that the caregiver receives reward in a sense of an important job well done.  The words may come from others, or from the patient in the form of emotional and heartfelt words of gratitude.  The caregiver can come away from this experience enriched in the knowing that another individual’s life and comfort has been positively impacted by one’s own actions.  I’m pretty sure there aren’t very many things that get any better than that!

Charmin on the Fringe

         So, I began this blog last week Wednesday and have attempted to bring y’all up to date on events over the past seven months in our lives.  (Please note the use of “y’all as indication that I do speak a reasonable representation of “Southern” now, complete with “fixin’, and “cut the light on/off”).
        This morning I’d like to talk about the incredible support that encompasses me.  It begins with Muggy.  Please keep her in your thoughts and prayers as this is very stressful and tiring for her and her own physical condition is susceptible.  She is there for me all the time.  And son Erik is ready to step up to the plate in whatever manner he is able to assist.  And the list can go on and on, but I hesitate to mention names as there are too many and it may become like reading the book of Numbers from the Old Testament.
        It’s amazing to be part of the family of God in general, but particularly when one faces a challenge like cancer. I took a course on Complementary and Alternative Medicine (CAM) last fall and it was enlightening how important spirituality and prayer can be in facing life challenges.  Not that I didn’t know that already, but I was happy to see it in a college textbook.  
            It becomes increasingly amazing when I consider that there are three other individuals who I know reasonably well in my present circle of friends who are also facing cancer.  I won’t go into details, but amongst the four of us we cover a significant portion of the body.  And, as one talks about the challenges (and, I must say that sometimes I get self-conscious because I don’t want to monopolize conversations), but invariably the subject comes up and I find out that the person I’m talking to has been through this, or knows someone who has.       
           I want to share my experience from the CT simulation last week.  I had no idea what it was and it proved to be very interesting.  A computer tomography (CT) simulation is a preparatory step to beginning radiation treatments.  An IV was started through which the radiation technician would insert dye.  I was then taken to the CT room.  Actually, quite typical of a CT room with the big donut-shaped machine in the middle of the room; but some other equipment made it unique.  There was a long, narrow device on the ceiling that obviously provided lasers.  I was here to be fitted for the mask that I will wear during radiation treatments.  
         So, Nikki (an absolutely over-the-top pleasant radiation technician) called an assistant into the room to help fit the mask.  It’s a webbed material that is soaked in some warm solution prior to stretching over my head and torso.  As I lay there experiencing this unique feeling I imagined that someone with claustrophobia would have a hard time with this. 
        After a few moments I opened my eyes and the experience reminded me of a “Fringe” episode.  (SIDEBAR:  If you haven’t watched Fringe, go to Netflix and watch the first episode.  You will KNOW if want to watch anymore!  Muggy and I were addicts earlier this year!)  In the particular episode, someone had created a sprayed weapon that caused all the openings of the body to become closed with rapid skin growth.  Laying on the CT table with this materials over me made me think that must have been what it was like on Fringe. 
            The radiation tech gets things all lined up and then the doctor comes in to verify the accuracy of the placement of marks so the radiation will be applied to precisely the correct location…within 1 mm!  Considering the multitude of vital tissues and what have you going through the neck (when you think about it, it ALL goes through the neck!  Well, not some things…thankfully!!).  And, I’m now carrying  placement marks on my chest and sides for locating the mask during treatment.
            So, that was all accomplished rather quickly and then after lunch we met with the medical oncologist, the chemo doc.  We talked for quite some time with him.  Due to my hearing loss, he has decided to use paclitaxel vice cisplatin so I don’t lose my hearing permanently.   Muggy and I figured a fun way to look at it was, “do you want to lose your hair or your hearing?”
            There will be six chemo treatments, likely done the first day of each week for six weeks.  Then there will be radiation for 15-20 minutes Monday to Friday for each of those six weeks.  There are lots of potential side effects, some pretty negative.  I’m choosing to remain optimistic that through proper care and lots of prayer that I will tolerate the treatments with flying colors!! 
           All in all, the reality of my circumstances began to weigh somewhat heavily on both Muggy and me.  We departed the hospital and headed north toward Tazewell, TN and the Chateau.             We spent a wonderful evening enjoying the serenity on our mountain; symbolic of yet another mountaintop experience with God.  A couple of years ago, He gave us a new perspective on mountaintop experiences.  Many times we tend to think of serious illness, tragic loss, etc as a valley experience.  We’ve chosen to look at these times as mountaintops.  And, whenever God called anyone up to the mountaintop, it was specifically to draw closer to Him, both figuratively and physically.
            So, it’s now Monday, Aug 26, 2013.  I have an appointment tomorrow morning with the doctor to discuss the procedure for the PEG tube (feeding tube).  That will be put in on Wednesday and require an overnight stay.  Then, on Friday we meet with the medical oncologist again in preparation for Tuesday’s start of this whole she-bang!!
            We move confidently forward with all of this.  Again, our thanks to the many family and friends who are supporting us!!  Watch for pictures as there may be some radical changes to the appearance of my hair.  I’m gonna have some fun with this and a good friend has volunteered to help…(Thanks Steffy!!).       

                                                           

            I leave you today with a thought that was brought to mind over the weekend and enjoying fellowship with friends at church.  Read the 7^th chapter of the book of Joshua.  Joshua is messed up and he’s having a tough time with failure and circumstances.  In verse 10 (one of my all-time favorites) God says,  “Get up! Why are you lying there face down?  In my vernacular, God was telling Joshua to “Shut up and color!!” 
            I’m ready to color!!

Words I’ve learned this week:
     Cachexia -general physical wasting and malnutrition usually associated with chronic disease
     Xerostomia - abnormal dryness of the mouth due to insufficient secretions—called also dry mouth

     And, for Muggy’s edification, the phrase “to bark one’s shins” , according to Merriam-Webster, means - to rub off or scrape the skin of, as by bumping into something.