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.
Thanks for the update. We need you here for many more summers.
ReplyDeleteI'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!
ReplyDeleteI'm waiting patiently to talk to you. Loves.
ReplyDeleteThanks for the update, I can't imagine how hard this is. Still praying for ya'll. so excited to see you more!
ReplyDeleteSummer 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!
ReplyDeleteAlisa 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!
ReplyDeleteAlisa, 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!
ReplyDeletesending prayers your way! update update! (Chloe Fullmer Smith grew up with Kari)
ReplyDeletePraying you are doing well. I have been battling the beast since 2009.
ReplyDeleteAlisa, 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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