Tuesday, June 10, 2014

not great

I miss yesterday's life already.

Scan results were as my doctor put it, "not great."  The good news is there is nothing new in the brain or elsewhere.  The bad news is those tumors hanging around the kidney have joined together and are invading the kidney, duodenum, and liver.

The cancer is spreading.  We have to treat it.

I have already tried radiation to this area.  Surgery would be pretty major right now (may include kidney removal and a colostomy bag).

My first choice is the TIL trial in Seattle.  I will call them and get the details of qualifying.  The big hurdle will be the colitis I had at the beginning of the year.  I will need a colonoscopy free of inflammation at the very least to qualify.  I need to make sure that is our only challenge, and then figure out timing.  It seems like they have to take the cells they have frozen in Seattle and multiply them even more and I don't remember how long it takes.

Second option would be the braf inhibitors.  I have a mutation in my cancer cells that allow for a quick and amazing response to these drugs.  They work within days and they work on most who have this mutation.  The trick is, they are effective for only so long.  I have never been super interested in this drug because I am not interested in a few more months of life.  But, I need to remember there are people doing well for years on the drug.  And we would be using them to shrink those tumors down to allow surgery, and then I could come off of them.  Not ideal in my mind, but I could get used to this.

How horrible for my husband to hear (I wanted to cup his ears so he wouldn't have to).  What an awful situation to explain to my kids (I could have squeezed them and cried like a baby, but I'm the mom).  It hurts to type it out (it makes it real).  But in the ultimate act of betrayal, my body is taking over.  It is what it is.

So tonight we morn.  Tomorrow we research.  This week we decide.  And then, we fight.

I worry tonight that I don't have what it takes.  I don't know what it's going to take, but I also know I have more strength and courage to give.  I hope they at least match up.

18 comments:

  1. Shoot.
    I had just read your happy vacation post from yesterday and was feeling hopeful. Thanks for the update and prayers are coming your way. Awesome to see you last month @ the reception!

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  2. Boo!! I hate that you all have to go through this, and we'll continue to pray for you.

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  3. If anyone has what it takes, it's you guys. We will all be here to help where we can.

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  4. There is a sad truth in the wondering if you have what it takes. There is a feeling of overwhelm and depth of grief that can hardly be spoken when something such as this comes into ones life; it's not only the cancer, its having to bring the kids and a husband along for a painful ride that they can do nothing to change, only watch and pray. But, I love your hopeful thoughts...tomorrow we research, we plan, we fight. You will have what it takes and more. I have been amazed at just what a person can handle when yoked with a loving Father in Heaven who, without a doubt, blesses His children with the best gifts. Prayers and blessings to you Alisa! I wish this could be easier for you. I really do!

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  5. You and your family are in our prayers

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  7. I find that people have what it takes when the moment comes when they need it. You've proven that principle over and over. Just a step at a time, right? I'm so sorry about this Alisa. I love you so much and I will continue to pray for you and your family daily. Thank you for being incredible!

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  8. This brought tears. You will have the strength you need. You have an army of people praying for you and your family. I love you Alisa.

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  9. I put your name in the temple this morning, before I read this. We are always thinking of you and praying for you.

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  10. Love you, Alisa. We're with you.

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  11. I am so sad reading this post. I am sorry your family has to go through this awful thing. I am so lucky to know you and have my boys friends with yours. What a great example you are!!!!

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  12. I don't even know what to say. My prayers continue, your always in them.

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  13. Always in my prayers. I think your "game plan" is a sound one. Let me know if you want another opinion too, my doctor is retiring at the end of this month but Dr. Kevin Kim, who is the Director of Clinical Research at MD Anderson is taking his place in SF at Cal Pacific Medical Center. He's top notch, and one of the country's best. Just a thought. I know you're overwhelmed though, I have been there, but you are doing the right thing. Let me know if you want to talk.

    XOXO

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  14. We love you and your family and will remain your ever faithful cheerleaders.

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  15. I don't like this one bit. I'm so sorry! I know you've got this though...you'll keep defying the odds like you've been doing for so long. Prayers and love to you and your sweet family.

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  16. You are amazing. Keep at it. All your efforts of research and hope and strength are paying off. I know it can't be easy to be so strong. Again, you are amazing!

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