Saturday, December 28, 2013

if the fates allow

This is Josh, scribing for Alisa.

She tries not to lift a finger.  Her only movements now are to the bathroom.  She has told me to gather the family several times for final goodbyes, as she feels this is her last...

Of course it's not, its just the IPI kicking in.  It began Christmas Eve with horrible nausea.  Christmas Day she got up to watch the kids open presents, then got back in bed and didn't want to be talked to, touched, or seen, or moved.  She is much like a cat that way, hiding in the garage in a corner until the worst is over.

But she couldn't hide.  We had to take her to the acute care clinic the next day to have her checked out.  They ordered an upper GI scope, to see what was going on.  There wasn't much diarrhea, so the symptoms were a little mysterious.(did you hear my stomach? [bathroom break])

The scope showed some erosion.  And we won't need to wait til the biopsies come back because we started steroids tonight, after the diarrhea started.

Alisa has been lying in bed looking up recipes all day.  Which is not only a waste of time, but pure torture for her.

Please pray the steroids work quickly.  She would love some goat cheese.

Friday, December 13, 2013

I can't complain

I remain almost symptom free.  I can't believe I only have fatigue (daily naps) and an occasional upset stomach to report.  At this rate, I will get a second dose on Wednesday.  Pretty exciting.

I know it's a little late, but I wanted to mention Thanksgiving.  I will say of all the lessons I'm learning, gratitude may be the most useful. 

It seems like in the end, when people look back on their life they wouldn't change things, but they wish they would have enjoyed all they had and the stage they were in.  I have been at what I thought was the end, and this certainly was my regret.

I can honestly say since my cancer diagnosis (and the worse the cancer got, the more true this is) that I have been grateful for where I was and what I had.  Most likely because I see life now for the precious, fragile, expensive gift that it is.

Sometimes when people ask me how I'm doing I kind of feel like they want the honest truth.  How are you, really?  Maybe I'm not telling the whole story on my blog (for sure I'm not).  But I'm certainly not skipping the bad parts here. 

The truth is, I can't complain.  When I start, and I do sometimes start, my heart just isn't in it.

Yes, I guess my life is hard.  I sort of have a gun to my head.  I do not feel 100%.  I have no idea how much money I have, as all my bills are in appeals with the insurance company.   I am running out of options.  That list could go on I suppose.

But do you realize that I wake up to my best friend since junior high?  And soon after a dog bursts into the bedroom and insists on kissing our faces good morning?  She is followed by a 10 year old who wonders what I'm making for breakfast.  He wakes the other brothers up as I drag myself out of bed and grab Josh's robe-which hangs right over a heater vent.  Heaven!  I make breakfast (unless Josh beats me to it or I have been nice enough to buy cold cereal) while they emerge from their rooms in clothes they know I won't let them wear.  We have that debate.  Every morning we have that debate.  They eat while I compile a lunch for those who don't want what's on the school menu.  James hasn't chosen a hot lunch in years.  Luke can't find socks.  Or a coat.  Sam stuffs his papers in his backpack that has not been cleaned out all year.  I try not yell about that.  James is tying up loose ends from yesterday's homework.  Finally they are ready and it's time for the carpool.  "Love you, have a nice day!"  "Love you too Mom!"  "Love you too!"  "Love you too!"

All that happiness before 8 in the morning.  We are literally just getting started.

So when I answer that I'm doing great, it's not just out of convenience.

It seems like others with cancer, or something horrible, who could complain all day use their words to praise and thank, rather than complain.

Maybe they, like me, are just happy to be here.

Tuesday, December 3, 2013

all is well

I keep waiting for the side effects to kick in here so I have something to report.  But there just haven't been many.  My stomach is maybe a little rumbly, and I might be tired.  A very different experience with IPI this go-round .  Last time I was in the acute care section at the hospital by now, unable to keep anything in my stomach, and in terrible cramping pain.  Also my tumors were shrinking like crazy.  I could feel them all melting away by Tuesday.

Maybe this time I will have a more normal reaction.  People don't generally see the side effects until about three weeks into treatment or later.  If I don't develop the side effects (colitis), I will get the medicine every three weeks for a total of 4 doses.  That is the plan for now.  I will for sure let you know if anything changes.