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.

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.

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.

IPI it is

After a very anxious week, here we are.  With IPI dripping in my veins.  My kidney is functioning at about 50%, so it looks like we will keep it in there.  For now.  I am not entirely sure how I feel about all this, but taking action right this very second feels a hundred times better than having no idea what is around the corner.  At least I can plan on being sick.  And plan on an amazing response.  :) 

the waiting game

Yesterday we pushed back the IPI infusion to the 27th.  The tumor board discussed the case.   There was only minimal growth in the kidney area, but it has an "invasion component" that makes it necessary to treat.  It used to be sitting just on top of the kidneys, but is now reaching it's little fingers into it.  One concern with tumors there is the possibility of the cancer throwing some tumor emboli out into the body (like blood clots but made of tumors?).  Never heard of that!  Didn't need another way to die of cancer to keep me up at night, did I? 

So they want to see if surgery would indeed be a possibility.  They need to see how well that kidney is functioning in order to make that determination.  If the kidney is not working, they may want to take it out.  If it is working, the surgery would compromise it's function, and we aren't really interested in that.   I really think it's still working (going with my gut here) and that we will end up doing the IPI and not the surgery, but I don't mind having all the facts before we make that decision. 

If the kidney is not functioning, we would do a PET scan and see where the other cancer is (if there is any other cancer, they didn't report the status of my other little tumors) to see if it all could be surgically resected.  If all the cancer could come out with the knife, that would be pretty exciting.  Going from 100+ tumors to NED (no evidence of disease, the gold standard) would be incredible. 

The previous decision to go with IPI before the TIL (Seattle) trial came down to the numbers, really.  We took out the money factor, and the side-effects factor, and it still looked like IPI had the better chance at a response.  The attractive thing about the TIL trial is the possibility for getting a complete response (all my cancer gone).  It will be hard if I never get a chance at that, and just possibly the stars lined up for that treatment, I may never know.  But I would hate even more to not give IPI a chance again, after what my doctor called an "unprecedented response" with my one infusion.

I wish these treatments were studied enough to have a clear outline of what you do first, what you do next, what you save for last.  We don't have that with melanoma as the drugs are so new and the data so scarce. 

Blah, blah, blah.  This blog has turned into boring medical blah.  It's the only thing right now in my small world that is blah and yet that's all I write about.  Huh.  I will work on that.

a plan!

Things are looking...good?  It's all relative, right?  The cancer is really only growing in the right kidney area.  There are multiple tumors there, and they are actually smaller than they were when we started PD-1, but they are invading the pole of the kidney.  So we need to take some action.  This is the spot they radiated in January of this year and the place that was causing pain when I started the PD-1 in May.

We have a date to start IPI again, November 13th.  The doctor will take my case to the tumor board on Thursday and see if the surgeons think it's operable.  But most likely we are going to see if that miracle IPI will work it's magic again. 

Josh and I think this is a great plan.  We wish I didn't have cancer at all, but I have a ton less of it after this last surgery, and the PD-1 seems to have kept things in other places pretty stable.  We are feeling really very lucky.

happy halloween

We made it though the crazy holiday!  I didn't have to do anything for costumes this year, we all just found something that would work.

Oh, Sam.

Luke got a kick out of people who didn't know him saying, "You're Luke!!"  The force is strong with this one.

Josh won the office costume contest with the old Ken doll trick.

James couldn't dress up for school.  And I wasn't around tonight-I was dressed up like a cancer patient to have my CT scan and brain MRI done.

 

 Doesn't get much scarier than that!  Results tomorrow afternoon. 

MRI photo.  Boo!!!