Sadness… Frustration… Extreme Weight… Sep 2017

Even the clouds were heavy this morning…  It was a morning when it was just so thick and dense and visibility wasn’t great.  Very similar to the space I’m in right now.  Things feel very thick and dense and hard to make my way through and I most certainly cannot see nor find a clear path.  I am frustrated again, I am feeling a lot of weight on my shoulders…I.AM.SAD.

I am doing much better at living our life one-day-at-a-time.  When I climb in to bed at night I tell myself that I did all that I could do to figure out my day and get through it the best that I could.

    • I did my best to get more information and progress with solidifying a treatment for Tim


    • I did the best I could at my job and for the company I work for


    • I did the best I could at trying to be a good friend and stay in touch


    • I tried to be a good daughter/sister by staying connected with my family (which I have failed at for a few days)


    • I tried to be a good Mommy and support my girls through the heartbreaks and difficulties they’ve encountered, to support them with academics, to support them with sports/activities/work, to support them through their worries about Daddy, to support them by just loving up on them as much as I could


    • I tried to be a good, supportive, loving wife


    • I tried to keep up maintaining our home

…and if i can say yes to all of those at the end of EVERY day, then I try to clear my mind enough to sleep.  Then I wake and say okay, I will do the same again today, I will TRY….at everything I can.

I think I feel sad, heavy and frustrated today because yesterday didn’t end on a good note.  We had dinner with friends and I came home, jumped on the computer and made a phone call to get some answers that were swirling around in our heads.  I’ve mentioned UC San Diego to you all before – the Principal Investigator of a promising trial is there and we had been lead to believe that if we couldn’t get the combo of these medicines administered here locally (which we cannot) that we could head out to UCSD and get it.  So when we finally decided that we are going to travel across the country for however long we need to, I call to ask the specifics of how long will it take to get an appointment, how long should we plan to stay in San Diego, etc.  I am then told…  no, it won’t be done.  Because why you ask?  Because now I’m told that this Doctor is “too pro-patient” and is too worried about the disruption to our life, the cost we will have to incur to travel so much and the risk to our relationship with our local Oncologist.  <insert very, very, VERY confused face here>  ummmm, if we are willing to uproot our life for an indefinite period of time and leave our children and bear the cost associated with such… then… ummm… excuse me… but isn’t that for us to decide?  As for our relationship with our Oncologist, Dr. Tejani, that is the last of our concerns.  He is the MOST supportive, loving, compassionate, intelligent man.  So, when I see you in person if you’re interested in WHY I think this is happening (remember, its what I think not know)…  I will tell you.

San Diego = Not an option for us.

I did get a call from MD Anderson in Houston, TX yesterday and they want us down there on Monday, September 25th. Yes, so that’s good news yet not an easy place to travel to (yet again).  We will make it work.

We are getting tired.  We are feeling an insurmountable amount of pressure.  We are worried.  WE.NEED.A.PLAN.  Our two week timeline/deadline is tomorrow.

So here is what I think we have left…  ummmmm, not a lot.  Houston cannot tell us over the phone if they’ve identified a Trial for Tim – that’s the frustrating part.  We could take a couple of days to travel down there for a 3-4 hour appointment to tell us that they have a Phase I trial which we already know we are not interested in.  Trying to remain positive that Tim will fit in to one of the two Trials they do have open right now.  Say a prayer on Monday that one or both are a match for us.

We know that some form of treatment at this point is better than none.  We are right around the 2 month mark with NO treatment.  This cannot continue.

Our options are:

    1. Houston (if a trial is identified on Monday)


    1. Work with Dr. Tejani here with one of the 3 traditional treatment options he has talked to us about – Irinotecan, Lonsurf or Stivarga.  Possibly a non-V600 BRAF Mutation inhibitor called Trametinib.

We will continue to stay close to and watch for the DART Trial to re-open, but unfortunately, we cannot wait with no treatment.

Gosh, now I’m a crying mess again!!!!!!!!  My neck is dripping, my shirt is spotty, my desk is wet and I can’t see clearly….  this is just so damn heavy and overwhelming.  What is the right move?  If you go with a trial you have to see it through – it can be months before you know if it is working.  If you go with a more traditional treatment you need to give it months to know if that is working.  You then need to wait and clear out from any treatments before trying something else if what you chose didn’t work.  REALLY??????????  I still sometimes have a hard time really believing this is happening and how incredibly difficult it is to decide what treatment is best for Tim.  Here’s the thing, we will never know if something else might have worked better, if the one we chose doesn’t work.  Nah, there’s no overwhelming sense of responsibility and pressure with that…  nah, not at all.  On the flip side I hope and pray that all of the work we are doing leads us to choosing the treatment that DOES work.

And people wonder why I look completely worn out.  Shit, I even have people tell me right to my face that I don’t look good.  That I looked worn or drained.  Yeah…  yeah, that’s what I want to hear.  Whatever…  I’m certain there is no deliberate harm intended.  And I wonder why I am so hard sometimes.  This life has made me so loving, so kind, so understanding and accepting of so much but then on the other hand, this life has made me so INtolerant of bullshit.  Enough bullshit.  Own your shit.  Be a good person.  Stop making excuses for you or your child for making a bad decision.  If you or your child acts like an asshole – own it, and fix it.  I am so at a point in my life where I have ZERO tolerance for people treating people poorly.  WHY?  I mean really, why?  Why do people do it?  They do it because they have their own shit they avoid fixing.  Friggen fix it!  And another thing that I absolutely NO LONGER can tolerate is the competitiveness – at the adult nor child level – you know, the Keep Up With the Jones’ kind of mentality.  The my kid is better than yours.  The my kid is on a higher level of play than yours.  The my kid gets better grades than yours.  I DON’T CARE.  That is only said to make the adult or child feel better and think about it really, how does it make the adults or children feel around you?  You already know, it makes them feel like they are less which is why you deliberately said what you said!!!  STOP IT PEOPLE!  Stop with the comparisons.  Stop with the pressure you put on yourself and your children.  STOP WITH THE JUDGING PEOPLE.  Embrace the differences we all have.  Look to learn from others.  See the gifts – they are there, in front of you and you’re missing them.  Love life.  Love where you are and what you have.  Work to do better if you don’t like where you are.  STOP COMPLAINING.  It is exhausting, draining and steals your moments away.  When you have something in your life that you CANNOT fix…that’s when true torture takes over.  So fix what you can.  Love all the time with an amount of intensity and passion that frightens you at first.  It might feel strange and uncomfortable but you will soon embrace it.  You will feel so much light and love.  Hug people when you see them.  Kiss them.  When you are in the midst of torture in a situation that is so out of your control all of those hugs and kisses and all of that love WILL carry you through.  That I promise you.  You will get back what you put out in to the universe so LOVE LOVE LOVE LOVE!!!!!!!!!!!!!!

I cannot believe how emotional I am feeling today and the rant that I just went on.  Well, this is my space and sometimes stuff builds up and needs to go….  it needs to get away from me so that it doesn’t steal my moments…  so I leave it here.  I think I’ve said enough today.  My tears are starting to dry up and for that I am grateful.  I am grateful for this space.

I will provide you with an update after our Houston visit and after we connect back with Dr. Tejani.  So you’ll hear from me probably Tuesday or Wednesday.

XOXO, Denise

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