Sunday, September 11, 2011

The Strong Desire to Be Translucent...

     Do you remember when Swatch Watch came out with the Jelly/Translucent watch where you could see the inner workings of how a watch actually functioned?  I do, and wish I had that capability with my own body.  How cool would that be, right?  Then there would be no need to explain myself or justify my actions, people would just know..."Leave Jen alone for a bit, her spine is red, she prob. won't ask for help I'll just fill in the pieces."  I know it is a weakness of mine to ask for help, but really the confusing part is I like being in, Control issues?  Now we won't go there.  grin...remember, I'm honest  lol....

     In all seriousness there is something refreshing about feeling independent and normal and I think I have gained tremendous empathy for the elderly when  say for example Grandpa who has been independent all his life gets told (not asked) his car keys will no longer be available to him.  I get it.  It's a hard place to be and although I'm not there completely, I have had days where it is frustrating and my pain in my spine and my hip limit my mobility to the point where I'm not effective even though I look like a healthy 35 year old mom.  Then there are days when I feel fine and it's completely easy to want to and live in the land of denial.  I like that place.  I like being the caregiver, not really sure it's comfortable for me to receive the care.  When I am in denial, I feel like the MOM and WIFE that I am and the one that can give back all of the love and support that has been given to me.  It's the weirdest phenomenon. I have tremendous guilt I put on myself.  No one is putting it on me.  I just need to let it go, but it's hard.

     So hard to explain in real time what I need and even harder to put into words what I need in real time.  I'm working on it.  I do wish i could be more for Jeff and for my mom.  Back to the Body World Exhibit and being translucent, I was always amazed when I went to see it and saw all the body parts isolated from one another. Those parts were not living obviously, but how cool if we could walk around and alive and translucent.  lol  Ahh, the places my brain goes.  It was an amazing exhibit and with aches and pains that are un-identifiable, itches that come out of nowhere, moods that appear to be caused by nothing other than being a complicated woman (grin) my brain got to thinking.  If only our bodies were Translucent.  If only, if only that would be so cool don't you think?  People could then go up to me and I can see things on others and just get it without words.  Obviously unrealistic.  grin.  I think it's funny I want to be a Jelly person...It would explain a whole heck of a lot.

     This all goes along with the theme "Fine on the Outside, More Confusing and Complicated on the Inside".  I have this outer shell that to an outsider seems so incredibly normal, strong, and like the feisty 35 year old mom I have always been.  I want so badly for my insides to match.  I'm for the most part doing an amazing job at being honest and authentic with others and myself, but to those closest to me, well naturally they are the ones that see the breakdowns for what appears to be no reason, the frustration for the lack of stamina that I once had, and the confusion as to what the next day will bring.  All those feelings even though I am strong, those feelings do enter and I am human.  They especially come rushing in as new pain has developed in my left hip.  I go in Tom. (Monday) to my medical oncologist.  He still may want me to wait on treatment, but then again he may want me to start.  My last scans showed things were stable, but I wish they showed shrinkage.  My tumors are still there and this stuff once again is reminded to me that it is not going to go away without a fight.  Back in the ring with my fighting gloves on I go.  This whole ride has been a roller coaster of emotions good and bad.  I like when the good ones and the gifts show themselves of course.  Perspective does teach you a lot.

      The thing that frightens me the most is not knowing what my limitations will be.  I try to stay in the now and like all of us it's good to not think or live in the future.  We all know there are times when that is easier to put into practice.   I get sad sometimes thinking that this isn't the wife that Jeffrey thought he was getting or for that matter deserves. He has never ever made me feel this way (no one has), but if I'm being honest to the core, these are thoughts I think about when I see his stress levels rise. I feel so helpless.   I want to be the old Jen and trying to find that old spark in the new Jen body.  I know I have limitations and yes, it's true it is frustrating beyond belief.  I do hate that this monster is in our family and am incredibly determined to get it out.  This holds true for my mom and other family members as her and their  help in all this has been so wonderful.  I guess I am just apologizing to those closest to me that may get a reaction from me that doesn't seem to make sense.  I love you.

       My absence in writing hasn't been because of avoidance but rather longing for a sense of living and doing and being in the mix so badly that by the end of the day I have nothing left.  I want to be the one to get Z ready for school and take him.  I love it!  I want to take him to after school playdates and fun.  I love it and I want to just do.  I'm a product of my own mother that way.  It makes me feel good and so I have been doing as I'm still unsure when chemo will start and I will have to rely on others completely.  I do it now and, I LOVE IT.  At the end of the day, I'm wiped out.

      In terms of adjustment, Cancer right now feels like our second child that came home from the hospital.  Cancer pulls me away from Z and things unexpectedly.  Cancer wakes me up in the middle of the night.  Cancer causes Z (and daddy for that matter) to be confused as to where mommy's attention went as well.  It just is what it is and I am now starting to try and re-pave my path in realizing we don't know how long this Cancer thing will be with us and it is up to me to just live as fully and as happily as we can everyday and understand that as much as we want to change certain situations, there are many things that are out of our control.  I am also beginning to realize that our whole family will need prayers for stamina.  This could very well be our lives for a very long time if not forever.  All we have is today.  All this is my way of processing a VERY BIG thing.  I find peace in writing, thank you for listening and allowing me an audience to process this.

      We were able to make a trip up to Austin to see family over Labor Day Weekend which was nice, but at the same time I am different and that part frustrates me.  Hopefully I am different only temporaily.  The simplest of things can overwhelm me and it's not the actual thing, but more my brain in thinking about plans, wanting to be included and then realizing that my pain is too great and I may have to be out and rest and that makes me sad.  Even though family understands, Z doesn't always understand why mommy has to be out.  The weekend wasn't without an emotional breakdown.   This is usually stemmed from me getting overwhelmed and because of that conflict of me wanting to be in the mix and feeling normal and then managing pain that comes on unexpectedly and then needing to check out and fully rely on others.  This is hard on everyone and the truth is as positive and as strong as I am, there are days where I just want to say "Enough already you monster, I want you out!"

      I could be going along just fine and then BAM!  I'm not.  Ahh, this makes me go back to the desire to be translucent... This is my solution for the hour....TO BE JELLY.  Love you my friends and family.  Keep Believing, Keep Authenticity, Be True to yourself and your core and fight this fight with me.  We all will be dancing happily.  I'm incredibly grateful for the genuine people in my life.  <3....

     Dr. appt. is tom.  They only want to do bloodwork and a chest xray... Seems strange to me as I am going in for my hip pain, but prob. will be able to tell things in my blood that I don't get.  Keep those prayers coming.  I feel them everyday.  You make me stronger :-)

     I'm writing this on a day of true HEROS.  I will never forget 9-11 and remember exactly where I was when it happened.  Let's also take some time to remember those families.  What tremendous strength and determination they have shown.


  1. Jen, you are amazing! We are praying for you to have strength to do those things that make you smile each day. Your ability to share what is on your heart is a gift, and you are truly an inspiration. Every day holds the possibility of a miracle,and I have faith that you will beat this monster that is attacking your body. God is good, and his love shines through you. We love you. xxoo

  2. Good wishes for your doctor's appointment - keep up the fight!