Answers: Part 6

Q:  I add that I don't know if I should come visit often because I want to be spending time with you or am I interfering with precious family time? What are things we can do to show or love and support?

Answer:  This one is a bit tricky.  Visits are good.  We especially love visits at chemo (for
              anyone that wants to come make the 8 hour day a go by a little faster).  It's not
              nearly as awful as some people have thought it would be.  It does make it "real"
              though (and so maybe that's hard).  Kyle does turn greenish-grayish-beige-ish by
              the end of the day too.  So be fore-warned.  Or come early in the day! 

              It's weird, some days, mentally and emotionally a visit feels good.  Some days
              it does not.  My best advice is to call or text and see what we say.  We're
              pretty honest.

              Showing love and support can be simple as mentioned before...a text to say "I'm
              thinking about you"  "How was chemo today?"  etc.  are so super fabulous! I've 
              told Kyle that this super reluctant texter (me) has a new found love with cancer...
    
              ...texting.

              We can connect--easily--if we need/want more we can call and return calls.
           
              We have had many kind acts of "showing".
      
              Notes in the mail, dinners, cards that are sent weekly to Kyle, treats on the 
              doorstep, emails, phone calls, texts.  Again, ALL those things are fabulous!

              We appreciate every single one.  Every single time.  Every time!

              So thank you, ALL of you who have done ANY and all of these things!

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Q: I was talking to a friend about you Kyle and your cancer yesterday. She asked if you wanted Dorien to remarry? Sorry, not really a cancer question, but I hadn't ever for a second even thought about that


Answer:  This one is a painful one for both Kyle and I, and it's a hard one to answer, 
              because honestly it has no answer.  Right now.  Maybe ever.  We cannot
              predict the future.

              We are pretty young (mid 40's--I know that doesn't sound young when
              you're in your 20's, but trust me--if I live to age 80, I still have half my life
              to go.   Granted I could get hit by a Mack Truck today and be dead, right?)

              Lets hope not though!


              I have 4 kids to be a mom to after Kyle is gone.  To raise, and provide for,
              and love and nurture and be there for, and help through lifes problems, and
              help and cry with and do for.

              The thought of being a single mom AND being alone for the rest of my life
              makes me feel sad and lonely.  When I think about it.  Which I do sometimes,
              I will be honest.  Kyle thinks about it too.  Sometimes.

              With ALL the ups and downs of marriage, I *STILL* only ever imagined
              growing old with Kyle.  He would make a mighty fine grandpa.  He would
              be the "fun one", no doubt about it.  (Again these are thoughts that are hard
              to "touch on".  Very very hard and painful to think about these things....

              Kyle, has always said I am free to marry again if, and when, the time ever comes.

              (Who wants to marry an old ugly 4 baby body saggy gross lady anyway?
                Seriously?  I know the realities of what I have to offer and it ain't much people!)

              He doesn't like to think about that one either.  But would freely give his
              blessing for me to move forward with that part of my life.  

              How about if we leave it at that?  There are SO many issues that swirl around
              that question, that we will just get through NOW and the next few years and
              then see where life goes.

              I may be the crazy cat lady (I *DO* hate cats though--so that could be a 
              problem)...but I could be that crazy neighbor lady that has a million animals
              who talks to herself and cackles crazily and all the small neighbor children
              "double dog dare" the other neighbor children to ring my doorbell and run.

              HA HA HA HA HA HA HA ..... (insert crazy witch laugh here!) ;)

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Question: A very broad question, but as your family goes on this journey, in what ways has your perspective on life changed? Is there a heightened sense of urgency to get certain life events completed?


Answer:  Yes, yes and a thousand times yes it has changed our perspective on life.
              You find that this diagnosis is a real wake up call about what is important in life.

              That would be family and people and love.

              It's about here.  And now.

              Seize the moment.  May hay while the sun shines.  Don't let time slip away.
              Take time to watch the sunsets.  Leave the chores for tomorrow.  Be here
              in the present.  Live for now.  Make memories.  Eat ice cream.  Sip Dt Coke.

              All of the nonsense (quite literally) falls away.

              Everything comes into a sharp focus, and quickly.

              VERY little of the things we (all) spend our time worrying about and doing?

              In the end, they matter VERY little.

              Ask yourself this question:  If I were told TODAY, that I would die in one month,
               WHAT would I quit doing?  What would I do?  Who would I spend time with?
               What would be REALLY important?  

              We all, already know what's really important...but I think life just gets in the way
              most days.

              Cancer wipes all of that away.

              *Heightened sense of urgency to get things done?  YUP!  Some things will
                not ever get done though because of the time factor.  You have a great sense
                to get things in order though.  For Kyle and I that even involves silly things
                around the house. Finishing projects, etc.

                As I watch nieces who will soon get married, those are the kind of "life events"
                that I know won't happen  in the time Kyle has left (no matter how far to the 
                "good end" of the curve he makes it with this cancer).  The kids are just too
                young...but THOSE are the "life events" I wish he would live to see and 
                 complete.

                Deep, sad sigh.

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Q:  Dorien Nielson, you, as the caretaker, do you get exhausted, mentally? Physically? Emotionally? I find myself getting wiped out & lose focus, can't seem to find normalcy - what do you do to take care of yourself?

Answer:  Caregiving is perhaps a whole different post.  But I will try and be brief.

             As mentioned before this is a burden that never goes away.  As a caregiver,
             you CONSTANTLY carry this weight on your shoulders.  It is exhausting.  In all
             the ways Teresa mentions.  (mentally:  you think about it all the time.  You worry,
             you wonder, if you will have the strength to face all that lies ahead.  You wonder
             if once you make it through the worst nightmare of your life, if you will have the
             strength to then live the other worst nightmare of your life and survive?!

             (Is it possible to live through TWO 'worst nightmares'??)
             Seriously, is it?  Someone tell me it is. 

             I will have to live through my husband deteriorating to a point which I honestly
             cannot even imagine.  Honestly.  

             I will have to watch him die.  Possibly a long and slow and (probably) painful
             death.

             That ALONE, is enough to break me.  Into a million tiny peices.

             I will then have to pick up the pieces of not only MY life, but the lives of
             my 4 broken, sad and grieving children.

             At the point when we will all need each other the very most, I will have to 
             walk away from them for many hours each week, working.

             Possibly finishing school as well, depending on how far down that path I get.

             I will have to be both father, and mother with all things "house" as well.

             All the things we have shared responsibility for, for 22 years, will be mine for 
             the doing.  On top of work and school and grief and children and life.

             (And you wonder why I keep threatening to go off the deep end? LOL)

             I could go on and on--but needless to say that both the present AND the future
             make me feel as if I will be exhausted for the rest of my life.

             It makes me tired thinking about it.   To make matters worse, sleep comes
             fitfully most days now anyway.

             To take care of myself, I try and make time to exercise every day.  I try and
             do as many "normal" things as I can, while I still can.

             There will come a time when, without ANY training as a nurse, I will become a full              time nurse to my husband.  A job I dread.  I do not like ANYTHING about                          nursing.

             Everything else will fall away except constant care for Kyle.

              Life.  Kids.  Work.  School.  Chores.  Laundry.  Yard work.  Reality.  All gone!

             Twenty four/Seven just care for a husband.

             I'm not sure if people realize how consuming this will be.  I watched my mom
             do this for my dad, when he died.  It was not pretty, or fun. 

              If you have no experience with this, you cannot even begin to imagine.

              Nor do you want to imagine.

              Hard to imagine now.  Awful and horrible to imagine now.

             So, for now, I won't imagine it.

             But there are moments I catch a glimpse...when the husband I've known forever, 
             who was never tired, takes 3 naps in a day.  When he gets pooped working in the
             yard for a while and normally he could go for days straight without blinking.

             Maybe it will sneak up slowly on us or maybe it will broadside us--time will tell.

              But someday it will get 'bad' again.  And then worse.  And then?

              Unimaginable.

              In some ways I honestly don't know if MY life will ever be "normal" again--
              it's hard to imagine it will be...but who knows?

              This is never ever ever ever where I thought it would be heading.

              Sorry, these answers were kind of depressing today.  But it's what I've got!
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