update

The plot is thickening over here.  This week I slept in Florida on Tuesday night, Utah Wednesday night and Washington Thursday night.  I had some appointments in Seattle about a trial they are doing up there that I qualify for.  The tumor in my armpit is growing rapidly and giving me some major grief.  The plan right now is to remove that tumor in Seattle on the 16th.  Possibly continue on the PD-1 trial in Florida (wish I would have known I could do surgery on this thing while I was on the trial) while we wait to see if Seattle can grow enough of my cancer fighting T-cells from the tumor they remove.  In 5 weeks they would know if the cells were growing enough (50% chance of this) to continue on with the trial.  If we get to continue, the trial is 7 days of chemo to wipe out the immune system.  Then they infuse your new boosted immune system (the cells they grew that were attacking the tumor).  And then they follow it up in the ICU with one week of IL-2 (remember those days?).

This is something I have wanted to try.  They think 50% of patients get responses.  That's not long term, just any kind of response.  I don't know the long term data.  I have read some encouraging stories.  I have also read some discouraging accounts.  I'm not sure what to think, but I'm running out of options, and I need to address this tumor that is becoming unbearable.

I hesitate even posting plans when they are temporary, but I know everyone is curious.  Just be flexible, because there are a lot of variables that don't sound fun to type up, and may change the game plan.  But this is what we are moving forward with for now.

I am still laughing about the late night conversation I had with the kids after I had flown home from Seattle.  I was explaining that trial and mentioned that I would lose my hair.  "No!!!"  Luke's face said, horrified.  "No mom!  Don't do it!!!"  Luke is kind of into his hair.  He loves to have it long, curly at the bottom, bangs swept to the side.  And the smell of hairspray is one of his favorites.  "It's no big deal.  I do not care about my hair."  I say in absolute truth, although the eyebrow/eyelash thing will be a little harder to swallow.  "Besides, it will be fun!  When moms with cancer have to shave their hair, in solidarity all the boys in the family shave theirs at the same time!"  That did it.  Luke's arms flung up to cover his head.  As he ducked under them, audible weeping was heard.  "NO!!!  I won't do it!  I can't!!!"

So I guess we won't all be bald.  Josh at least has kindly agreed to join me.

The issue I am having is that the surgery will be quite major at this point.  The surgeon would expect lymphedema in that arm with the amount of lymph node involvement that seems apparent. When I lost my leg to lymphedema (that is dramatic of course, what I mean is that I have to cover it to hide the compression stocking that I have to wear all the time) I just had to be proud of my arms.  Slender and long.  I almost said no to the surgery because of this risk, but it would be a little like Luke's reaction.  And I'm bigger than that.  Right?  I guess we are all a little vain.

I was running a fever in Seattle, and have started night sweats again this weekend.  Combined with the increasing pain, and hours on the phone with hospitals and insurance companies, I am feeling like a cancer patient again.  Josh is worried.  I am grumpy.

All this under the turquoise September sky, and our bellies full of peaches, and the mountains all around us changing colors.  It's fall!  Cancer can't possibly be our reality.

Sorry about this graphic image.  My beautiful armpit!  This tumor seems to be growing every day.  Yikes!!