Sunday, June 23, 2013


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.

Sunday, June 2, 2013

breaking news and pain

Last week the pain was getting a little out of control.  This strange, new pain.  Sometimes it just whines at you, and you can demand it stop, or get yourself busy enough to drown out the noise.  You can ignore until you try and do something normal.  For me that was bending over to tie my shoes.  Also walking up stairs hurt.  There was no exersizing because taking in a deep breath was out of the question.  Take a pain pill and all that stuff could be gone.  But then you feel like crap and sleeping anyways, so you didn't do anything.  Those were the choices when the cancer whines.

But sometimes it screams.  Like it wants to get out so bad.  And there is no choice but to silence it.  Because nothing else on earth matters but getting rid of that pain.  You can't see or think past this kind of pain.  It is all consuming.  The kind that puts you into tears.  The pain pills don't bother you then, because you were getting nothing acclomplished without them.  For that kind of pain they give you breakthrough pain meds. 

Besides the fact that the pain hurts, it terrified me.  So far my only symptom of cancer has been soreness in my bones when I put weight on them (over a year ago guys-I now have no cancer in my bones).  It has been the drugs that have made me sick, not really the cancer.  But now here is the cancer taking over my body and mind. 

I have been dealing with this pain for a while now.  It got to the point where I always felt it.  And I often had to take pain pills. 

But Monday morning I woke up feeling okay.  So okay in fact, that this house that we just bought, that I haven't even cared about, suddenly mattered.  It suddenly mattered that I didn't have a couch to sit in upstairs.  It suddenly mattered that I have been sharing the basement bathroom with my boys.  I knew it would someday, mostly because I could tell it mattered to Josh.  He has been working on this house every spare minute.  Luckily his mom knew it was important to him, she has been here working since we moved.  My family has been here often feeding us and cleaning up.  I just couldn't see what all the fuss was about.  It didn't matter to me.  I have been focused on getting my dream drug and getting out of pain. 

But suddenly this week I see the bigger picture.  Last night Josh got the flooring done and we opened the front door to the most beautiful view of the lake and the mountains and the clouds and the valley.  I for the first time was excited about the move.  The move that happened a month ago. 

I smiled and took in a deep breath.  It didn't hurt.  It doesn't hurt.  I have not had any pain pills all week.  Sometimes I feel a little nauseous.  But feeling way better than I did 2 weeks ago.  I have a hard time believing that this drug has worked so quickly, but really?  Is there any room for doubt over here?  This is exactly what happens to me.

Today I keep getting alerts from the annual ASCO (American Society of Clinical Oncologists) meeting which is going on this week.  What is the big study coming out?  A phase 1 study of IPI (Ipilimumab) plus AntiPD-1 (now it has a name-Nivolumab).  When patients are given the maximum dose they are producing a 53% objective response rates (tumor regression of 80% or more).  So incredible.  Seriously.  Those numbers are incredible.  Their conclusion?  "Concurrent therapy with nivolumab and ipilimumab had a manageable safety profile and provided clinical activity that appears to be distinct from that in published data on monotherapy, with rapid and deep tumor regression in a substantial proportion of patients."

Rapid and deep tumor regression.  I am pretty sure that is what is going on over here in Lehi Utah, folks.  Incredible.