When the weight of the world is on your shoulders…. Aug 2017

and you feel lost and like you’re failing…  you crumble.

So maybe it isn’t the weight of “THE” world…  it is really just the weight of “our” world.  My daughter’s world.  My world.  My husband’s world.  When you feel this weight, this pressure…  all you need and want to do is get someone to help you.  You want to get answers.  You want to find out and know what your options are.

When you have to chase people – Leave messages and not get returned calls – be told conflicting information – get turned around in circles time and time again…  that is when you crumble.  You fall apart and feel like you cannot, and I mean absolutely cannot take any more.  So you start crying.  You cry to people on the phone that you don’t even know.  You gasp to catch your breath so that they can even somewhat understand what you’re trying to say to them.  You cry so much and cannot control it and your daughters in the room next to you hear you; something you desperately do NOT want to happen, but again, you’ve crumbled and you cannot take any more.  You just cannot hold it in any more.  And there sits one of your daughters in front of you as you so desperately cry in to the phone to this person on the other end, that I don’t think can even come close to understanding what you’re going through.  She sits there with such a painful look and worry in her eye.  Yes, you feel even more failure, even more crumbling inside you.

This was what I lived through this afternoon.  All I want is information and an appointment for my Husband so that I can understand what options we have for clinical trials.  I have now been told something different about our eligibility so many times that I have honestly lost count.  Only to try to pull myself together at the end of the day, to attend my daughter’s soccer game, to see yet another email telling me something different.  I called NCI, then Foundation One, then our Oncologist, back to NCI, back to our Oncologist, back to NCI, then Foundation One…  and who knows in what order it went after that…

I just really want to scream.  All I want to do is help my husband, help my family.  I want a chance to get my husband well and I cannot find someone at the NCI that wants to help me.  The brick wall that I feel that I’m running in to is really painful.  I just can’t get anywhere and I am honestly in so much pain.

I cannot take another day like today.  I feel like the life has been completely sucked out of me.  My poor sweet girls to have to hear that today, I can only imagine the additional fear, sadness and worry that inflicted on them.  My God, I cannot do it sometimes and more than I have in some time, I really need your help.  Your direction.  Your strength.  Your support.  I need you so much.  This is so rough.  It just shouldn’t be this hard to figure out.  You would think there would be someone there to hold your hand and help guide you.  You would think there would be someone there to care.

But I know there is not.  There is not anyone there that can do this for me.  There is not anyone there on the treatment side of things (other than Tejani and Team) that really cares.  THIS IS ALL ON ME.  IT IS ALL UP TO ME TO FIGURE OUT.  TO HELP HOPEFULLY FIND THE RIGHT TREATMENT FOR TIM.  IT IS ALL ON ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  OMG….  SOME DAYS TRULY ARE JUST TOO MUCH.

Thanks for listneing and I know you all care…  I do.  This is not about you and your love and your support.  For that and you, I AM thankful.

XOXO, Denise

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Posted in Tim's Story

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