Sunday, June 23, 2013

hello

My heart has been quiet for a while.  I wonder what to say when people ask how I am doing.  How has my summer been?  Am I liking the new house?  How are you feeling?

Physically I feel great.  The second dose of AntiPD-1 was supposed to bring on more side effects than the first, so I was a little bummed I didn't feel sick at all.  No night sweats, no chills, no diahrreah.  Other than a pretty strong pull to my bed for an afternoon nap-I felt no difference.  Tumors seem to be stable, or maybe smaller, but not a definite difference from the first dose.  The large axillary tumor is still alarmingly large.  The third dose was completed on Wed. and I have only felt a little chill in my bones and a desire to sleep.

Mentally, I do not feel 'great' yet.  I worry about things.  Well, I don't allow myself to worry about things (like is this really going to work?) by shutting down parts of my brain or something.  I am just numb somehow.  This may be a way I cope with things, but it is not the way I want to live.  I am trying to break away from this pattern, and hopefully will find success.

One year ago they found cancer in my brain.  In 25 spots.  One year ago I was devastated. 

I am so grateful that I am still in this fight.  It's a fight till the death, and usually does not take this long for someone to win.  But I'm holding my ground.  I am praying that science can stay one step ahead of my disease.  If every year I just need some medication to give me another year...

I used to wonder why we prolong our lives.  Why we even offer toxic medicines that are only supposed to give you a few extra months (this is not the case with my medicines so far, as they do have the potential for long term responses).  But every day I get it.  The kids are so funny, and the moon is so wonderful, and the raspberries so ripe.  Anything for more of this.  Even just a little more.

Today I had a plan to blog about all our recent events.  I had Josh take the kids to the rope swing by the river (I cannot get anything done on the computer when they are around-I would much rather be hanging out with them).  I started typing and soon the world went black.  An hour later I was awakened by the slamming of doors and kicking off of shoes.  I had only gotten two paragraphs typed.  The last one talked about my desire for naps.  :)

So hopefully I can stay awake long enough to fill you in here pretty soon.  Thank you for your concern and continued prayers.

10 comments:

  1. Thanks for the update. We need you here for many more summers.

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  2. I've been anxious to hear how you are. I'm sure you get so many requests for info and it's probably tiring, so thanks for taking a few minutes to fill us in. Keep going girl!

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  3. I'm waiting patiently to talk to you. Loves.

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  4. Thanks for the update, I can't imagine how hard this is. Still praying for ya'll. so excited to see you more!

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  5. Summer is good. House is lovely. Scenery is beautiful. YOU are living - now that's worth celebrating! Thanks for the update. And that rope swing is awesome. Tell the boys hello from Georgia!

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  6. Alisa I love you! You have seriously changed my outlook on life forever and I have been so blessed to know you! You are beautiful! Keep fighting! You amaze me!

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  7. Alisa, I have been thinking about you all summer! I keep checking back for your posts. I hope you are holding up ok and that you are having a wonderful summer in your new house. Still always in my prayers!

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  8. sending prayers your way! update update! (Chloe Fullmer Smith grew up with Kari)

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  9. Praying you are doing well. I have been battling the beast since 2009.

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  10. Alisa, I check for updates on your blog every few days. I hope & pray you are doing okay. I know how hard it is to "talk" about your health when you just want to be quiet and normal. I, too, go to Huntsman Clinic 2 and seem to be a step or two behind you in my own battle, so I love your insights, your successes, and your positive attitude. I'm waiting to be accepted into the PD-1 study - it's hard to wait when you just want these growing cells GONE. God bless you. May you feel the strength of prayers being offered in your behalf.

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