Friday, April 20, 2012

raging storm

I'll be truthful here.  I could write a pretty bitter chapter this week.  But I'm keeping to a short post.  And then I will try and get over it. 

This may be the hardest part of my journey yet.  Not giving into those bitter feelings.  Recognizing them when they come, but letting them pass right through.  I do not want to give them any of my energy.

But.  This week hope has stabbed me in the back.

As much as I want to believe that a good attitude about the whole situation will improve my prognosis, I don't know.  So far it hasn't worked for me.  Three years out of this I totally 100% believed I would never see cancer again up close.  Six months later it was back.  The beginning of this week I just knew this treatment would work and I would live years and years because of it.  Can you imagine my surprise?

How do I feel about the results this week?  How would you feel if someone peeked inside you and found a body full of tumors?  It's creepy.  There are tumors in the armpit, chest wall, breast, near the kidney, liver, bones, and back.  Other than the liver and bones, these are new since my last scan 5 weeks ago.  So it's not looking good for me.

I am not giving up on IL-2 all together.  Of course there is a chance that this next dose does something amazing.  But most likely I will "fail" this treatment.  Josh asked if this was my first experience with failure.  For sure with something this important, my one out of two treatment options.   I do think the IL-2 will help the Yervoy (or IPI, the other treatment I will try next) work better.  There is a tail end of the curve of people who achieve long term responses from Yervoy.  It is a minority.  I for sure believe I could be one of those.

There is also a new drug being tested right now called anti-PD1, it works similar to the IPI, but uses another pathway.  Dr. thinks this would be tried after IPI.  These immunotherapies generally take months to work.

And don't forget, in our back pocket we have the BRAF inhibitor (Zelboraf).  It is a very cool drug, can melt your tumors down in days.  The problem is, it works for about a year or less, then the cancer figures out a way around it and comes back in an angry mess.  Again, there is a small number of people who have been on it for years.  And yes, I would love to be one of those.

What about the TIL transfer in Maryland I was so excited about?  Still a possibility, but the more I research the harder it is to find people who have gotten a long term response on this trial.  It does seem to help for a while in a majority of the patients.  Right now my reasoning is saying, do I want to do that for just a few extra months of life?  What if it was a year, would that be worth it?  I don't know the answer.  It is the ultimate chemo experience (regular chemo plus IL-2) which I am not scared of.  But I would need to believe it could lead to a long term response.  I am still gathering info on this option.  The other problem with a trial is I think you need to be off of all other treatment for 4 weeks usually before starting.  I don't know if my cancer is slow enough for this.

Normally these treatments would extend my life months, not years.  I know nothing of normal, so I am not going to say that this is the case for me.   But what am I supposed to believe at this point?  I am so torn between faith and fear and hope and reality.  A confusing place.

Cancer, guys, is not a blessing.  Maybe if you have it at some early stage, it changes your life for the better.  Maybe if you are old enough to 'go', it is a great way to say your goodbyes.  But I have not heard people who have lost their loved ones to it, call it great and thank it.  In fact they HATE cancer.  They donate money to wipe it off the face of the earth.  They do their best to get the word out.  To prevent, screen, support.  They would not wish it on anyone.  It is such a mean disease.

The blessing of cancer is the perspective it puts on things.  Living your life in gratitude is a lovely way to live.  Trust me.  But what is an eternal perspective going to do for me when I'm already a part of the eternities?  Why give this perspective to people who can only use it for X amount of years/months? 

As we remember the Titanic this year I couldn't help but ask Josh if this is not a boat slowly, so slowly sinking to it's grave.  The terror of knowing you are going down, drawn out over months.  He said its a hard thing to watch from the shoreline (Josh just realized this week that I am not going to be around in 20 years.  He has had his moments this week).

Who can help me?  Only God at this point.  But he doesn't pull everyone (no matter how deserving) out of the water.  That I know for sure.  I know he can.  That is not the question.  

What about the kids?  Don't they deserve a mom and a dad?  I didn't even come up with that one!

I'm telling you, it gets ugly over here sometimes.  Even Spring seems to mock and torment me this week.  How can this be?  What is this ugly take on life?  I remember when I was first diagnosed I would drive by a group of teens dressed in black with purple hair and nose rings and heavy eye liner and chains.  I in my flowery white buttoned up blouse and pink cardigan would say aloud in my car "I get you guys.  I am one of you guys!  Let's hang out!!"  Which is totally silly because these people are probably not angry.  They just look the way I feel.

I hate cancer!!

But here is the trick.  This hate is not always a bad thing.  It gets you mad enough to keep fighting.  And I will.  Don't take this depressing post to mean that I am out of the game.  No way.  I will continue to fight.  Always.  I will throw every ounce of courage and strength I have in the battle. 

And I will even come around again and revisit hope.  And hope knows no limits.

The thing about these dark days is, they don't last.  I just need to get through them and like I said, get over it.

James has almost perfected this piece he played earlier on the blog (recital next month).  Raging Storm is the name.  I wish I could pound something like this out right about now!


  1. Alisa. We love you, and we will hate along with you.
    -Eric and Emily & kids-a-prayin'-for-ya.

  2. Hating along with everyone else.

  3. Alisa - Thank you for sharing your thoughts. I think about you and your family everyday because what you've got in front of you seems so brutally in your face. I am grateful that you are willing to write the questions and struggles that come with that down. Sometimes I have a hard time with pretty sounding platitudes about trials - they never seem to really speak to the agonizing experience of them. I love your blog because it is never that - I hear the struggle and I also hear your courage and despair and fierce hope and everything that is part of experiencing cancer. All my love to you.

  4. Alisa we pray for you and ache for you every day. I agree with everything Julie said.

  5. All that hard work is really paying off James. That was amazing!

    I HATE cancer too Alisa, there is just nothing to like about it. Thank you for being so honest about your feelings and for sharing your journey. Keep that anger alive enough to keep fighting!

    You're so right. Hope has no limits.

    Love you so much!

  6. You are so good at expressing your feelings and emotions on here. I HATE cancer too! You are strong and I admire you. I continue to pray for you and your family!

  7. Words can not adequately express how I feel for you and your family. I am so sorry that you have to go through this. I admire your honesty and example of courage and hope. I will continue to pray for you, and hope, hope, hope that this horrible cancer will subside in your body.

  8. Alisa-
    You and Josh are in my thoughts everyday. If I could do this for you, I would. Truly. I recognize your frustration at the situation, the anger, the attempting to see blessings and feel gratitude when you really just feel angry. And it's OK to be angry. Brent's cancer/TP/chemo has changed our lives forever, and I wish I could say in a positive way, but that is a lie. He too looks for and hopes for the miracle TX that will save him for many more years...and who knows if he'll ever live to see it? Trying to stay positive and upbeat when the odds are not promising is incredibly trying and much of the time, unbearable. I, for one, salute you for the bravery of saying what you feel and not sugarcoating things. As simple as this sounds, you are in my prayers always. Somehow, it will be OK. Maybe not the OK you want, but OK. Love you. Buffy

  9. Keep wearing your flowery pink button up blouse and white cardigan. You look beautiful. It's okay sometimes if you need to go find something to pound.

    P.S. James is so stunning to listen to. Keep up the good work!

  10. I find your anger and will strangely inspiring, and always have. I love you for your passion. Your passion is what will get you, and all of us through this. Can't wait to chat. Xo

  11. Death to cancer. Long live Alisa!

  12. James is amazing!! As far as cancer......where can I buy my "I hate cancer" shirt, I'll wear it proud every day.

  13. I love your honesty. I look at you from two houses down and wonder, "how does she do it?, Does she break down? What is Josh feeling? How would I feel if in the same position?" I am touched with your words, feelings, and fears. You are inspiring my friend. Sending you a big hug!

  14. Alisa,

    You don't know me, but I so look forward to reading your updates every week. In fact, your blog is the first one I check on my long list of blogs I follow! I heard about you from my sister, Jen T. Her husband Paul is your relative. Anyway, I just wanted you to know that you totally inspire me. I love how you say it like it is. You give such a raw glimpse into what it would be like (somewhat) to have cancer. You make me cry, laugh, smile, try harder as a mom, and appreciate the moments. Just wanted you to know that some stranger, a mom with 3 young boys, is back East somewhere thinking about you, praying for you and is in awe of your strength and courage. Thank you for sharing your journey with me, as hard as it is.

    -Angela H.

  15. You are right. Cancer totally sucks and I loathe it! I'm so, so sorry my friend. We are always praying for you and Josh and your boys. Keep fighting. Ditto to what everyone has already said; you are inspirational. Thank you for helping me remember.......time is good at making us complacent.

  16. I agree. Cancer sucks, no other way around it. you are sooo strong, you are amazing, and you have a very blessed family. I was sooo bummed I didn't get to see you, we were just there for such a short trip. But Austin LOVED seeing James and made his trip!!! btw James is an amazing piano player!!!

  17. so so sorry Alisa!!! You are amazing, and we all hope for the best, we are always thinking and praying for you!!