Saturday, June 23, 2012

grounded

The Doctor eased into the bad news a little better than I did for you here.  He was professional and kind when telling us what were up against, and what we were going to do about it.

IL-2 produced some pretty amazing results, I don't think any tumor that was there at first (in January when if popped up everywhere) is anywhere to be seen.  Nothing on the bones is 'lighting up' on the scans, and the liver spots are almost not there.  Strangely, there is really nothing new in any of the organs, except the most important one.

It has been 4 weeks since I did IL-2, the washout period you need to get into a clinical trial.  I was really hoping that I would have those options.  Brain mets (I will be using that term lots, short for metastasis) in this quantity pretty much disqualify you for anything.  Our goal is the get them stable (prove they aren't growing) so we can qualify for a trial down the line.

To do this we are going to start early next week with IPI (Yervoy) and Temodar.  Temodar is a chemotherapy that has the ability to cross the blood brain barrier.  It may (I don't know the odds here, 20%) help keep the tumors under control while we wait for the IPI to kick in.  IPI normally takes 12 weeks to work (I'm not an expert this is just what I am piecing together).  From what I have read, the median survival after being diagnosed with brain mets is 3 months.  Yeah, not so great math.  And usually you are talking a few brain mets, I don't know the statistics on 25.  The temodar effects only last a short time, but maybe enough to give time for the IPI to start working.  We are hopeful that because I had an immune response to the IL-2, that I will have another with IPI.  IPI does not cross the blood brain barrier, but if you can get your immune system to go after melanoma, the T cells that attack can get to the brain. 

Braf drugs.  Would be an option right now, but while the mets are so small, and we know my body can fight the cancer, we are waiting till the last minute for that one.  I would rather do treatments that have a lasting effect (IPI) while I can.  The Doctor thinks the Braf drugs work in about 40% of brain met patients.  So there is not even a guarantee there.

I was strong during the explanation.  Mostly I was shocked.  Really, I never thought it would be this bad, this fast.  I started crying only when I asked about driving.  Seizures are a common symptom of a brain tumor (although he thinks I won't have symptoms yet, with tumors this small).  He recommends I do not drive until we get this under control.  If I were to seize while driving I could do harm to those I was driving, and those in my path. 

Yup, I'm grounded.  For life, really.  And that is the what made me cry.  Not the 25 tumor in my brain part, or the probabilities part.  Not when they pulled my PET scan up and showed me all the little places around my body the cancer was hiding, or the side effects of the drugs part.  Not even when I realized that this is such a long shot.

Just when they took away a little freedom.

I am a pretty spontaneous person.  I don't love to plan.  My favorite mornings are always when I wake up and get an email from google calendar that says "you have no events scheduled today."  I don't like to plan a trip, really till I'm there.  I like to go to the grocery store and just see what inspires me.  I love to drive my kids up to the mountains.  I love to get away by myself in the car and blast country music from the 90s.

Sure, I can get along without a car.  I know everyone will help me.  It just stung.  And it changes things now.  I will rely on friends and family until we can get a nanny hired.

*****

Friday morning, right before all this happened, Josh woke up at 5.  He propped his head in his hand and stared at me for 20 minutes before quietly slipping off to work.  "I loved it.  You looked so beautiful." 

I woke up a couple hours later and rushed to get out the door to be at the hospital on time.  But I froze when I went to brush my teeth.  I saw someone who would soon meet her greatest fear, times 25.  I had no idea, but it seemed like my mirror image knew something.  She looked like a warrior princess waiting to attack.  Beautiful and calm.  Full of determination and strength.  "You can do this" she told me.

I was reminded of the day I learned my cancer had spread.  5 years ago.  A similar recognition and encouragement from the girl behind the glass.

I have never seen that pre-cancer girl again.  Although it would be fun for a while, I do not want to be her.  I want to see the warrior woman who has fought and conquered.  And I want to see her for years and years.

Tonight.  Hard to believe I am anything but healthy.  No symptoms.

42 comments:

  1. Warrior woman is right. I see nothing but strength in you.

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    1. Absolutely! Thanks for the bubbly.

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  3. Josh is right~ You are so beautiful!

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  4. You are simply stunning in every way possible.

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  5. You are the most gorgeous - beautiful in so so so many ways. Go and fight warrior woman - with all the strength in you.

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    1. I may need to borrow a leotard to pull off warrior woman. Do you remember that?

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  6. Alisa, I don't know what to say because on one hand I want to acknowledge how awful it must be to face the real possibility of your own death through the small restrictions that change your everyday life (no longer being able to drive and to move around the world the way you want to would be truly horrible, but doing that while facing death would be agonizing). On the other I want to give you all my love and hope and faith. I love you.

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    1. Julie, I love you too. Thank you for your words of encouragement, always. I hope you will write all about your adventures in Africa.

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  7. Sending all my love and prayers your way Alisa! You are so strong. Thanks for being such a great example to me.

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    1. And you are a great example to me. You give me hope.

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  8. You are The Warrior~ You are AMAZING Alisa, My heart just breaks into so many pieces, your seriously one of a kind, your smart, your beautiful- your everything, you keep us all informed into your personal life, thank you for allowing all of us in and allowing us to pray for you and your family. You are beautiful! You are SHE-RA Ü If you need ANY help, I am glad to help! I have a friend who has a great nanny from city sitters, they LOVE the babysitter! Keep your positive outlook you amaze me.

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  9. http://www.sittercity.com Here is the link to some nannies! Good luck on your search!

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  10. My family is amazed by your strength. We will say a prayer for you. ~ Chloe (Fullmer) Smith and family. (your sister Karis' friend)

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    1. Thank you Chloe! And for your kind words earlier on the blog. I do remember you!

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  11. You, Alisa Johnson Linton, are that warrior princess in the mirror. You CAN do whatever you need to do. I believe in you. And...I love you. Sending all my prayers and faith your way.

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  12. You are a beautiful warrior princess!

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  13. Alisa, I can't even imagine all of the emotions you are experiencing. And the news of 25 brain tumors...?! @#$*%^$%^&$!@)(*(&*^!!!!! Keep fighting my friend with all your might, and I know you can and will. You are amazing!! All our love and prayers to you! ~The Nelsons

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  14. I want to bawl my eyes out. You amaze me. Hang in there! Wish I could be your driver. :) and great picture of you!

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    1. When you come home you can take me somewhere fun, yes?

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  15. Alisa, I have read your blog for a few months now and you are in every single prayer of mine. Here is a song by Hilary Weeks that is absolutely beautiful. I hope it brings you a little comfort and peace.

    http://www.youtube.com/watch?v=HCVT88Dz_CM

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    1. Loved it! Thanks Macy, nice to hear from you again!

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  16. Sending lots of prayers of courage, strength, love and miracles to you and your family!

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    1. Thanks Mindy! We need to get together this summer again.

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  17. Alisa, you are a beautiful, courageous, strong warrior woman! I loved your post, despite the news. Did I tell you about the lady I met who was diagnosed 10 years ago with Stage 4 Melanoma and had over 77 tumors througout her body? Doctors in SLC told her she probably only had a few months to live, yet she didn't give up and ended up doing a clincial trial at NCI (ironically, Ipi when it was in the beginning phases of clinical trials). She is still alive today, in remission for 10 years and doing well! She lives in Logan, UT actually. Her story is one of the most inspiring I have heard. She has also beat breast cancer three times!

    I pray for you everyday and know that you will hear the sweet words, "remission" someday. I know that miracles exist because I have witnessed many in my own life. I know the emotions you are going through. I know what it's like to wonder if you'll even see your next birthday or see your kids grow up. I know how it feels to feel like you're stuck in this cancer "bubble" while life moves on around you. But there is hope and there is an end in sight. Life will be normal again (ok, maybe a 'new' normal) and you will not think about cancer everyday. Those are things to look forward to!

    Christina McEvoy
    http://strongenough-christina.blogspot.com/

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    1. I LOVE THAT STORY. And Logan is like, practically my home town. So that has got to mean something. There is hope, thank you so much for the reminder.

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  18. Our thoughts and prayers are with you and your family.
    Love, the Huish's

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    1. Thank you. I think you asked earlier for a rundown of my history. I have been meaning to do that, and just put together a synopsis on my recent post. Hope that helps.

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  19. From here on out, "Hero" is spelled ALISA. How can it be anything else?

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  20. How do you do it? Time and time again I turn to your blog for an update, expecting to read some expressions of finality, that at times might regrettably match my sentiments and worries for you and Josh and your boys. And yet, I read HOPE! I don't know how you do it. There are depths of faith in you that I didn't know existed, and it is infectious. Thank you. Of course we continue to pray for you, weep with you, and hope along with you.

    -Eric Stauffer

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    1. Thanks Eric. Read hope into everything. That is a wonderful way to live.

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  21. Alisa, Cory showed me your blog a while ago & I have been following your trials of faith. I am astounded at your strength & courage! I work in the ICU where I see sickness & death every time I work. It hurts the most to see young patients with families that love each other so much. From the medical side looking in, I can speak for your healthcare providers & let you know that they really care about you & your family. You keep fighting & kicking & screaming! You are the strongest person I believe I have ever met! Our prayers are with you & your family. (From Mel, Cory's wife)

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    1. Thank you Mel. I am so so grateful for everyone that has been taking care of us. You make a difference, I loved the staff at the ICU, they felt like family at the end. Take care!

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  22. Alisa,

    It is so amazing to read your blog. I work for your brother-in-law Richard, and he is so proud of you and encouraged by you, and I am thankful that he introduced me to you in this virtual way. Please know that you and your family are in my thoughts and prayers.

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