Tuesday, July 29, 2014

day 6


I had no idea there were this many miseries.  I told Josh never ever to let me take the hard route again.  How can I back out now?

Monday, July 28, 2014

Day 5

Alisa is feeling really sick.  They just gave her dose #11.  The max is 14 and at this point she has decided she is done.  The doctor is going to come back in and talk to her at 1:00 AM for her final decision (in case she is feeling better, I doubt it)

She has a fever almost all the time.  They gave her some blood this morning because her red blood cell counts were low.  Because she had a fever during the transfusion, they had to stop and check if there was something wrong with the blood.  They doubt it, but they have to make sure.

If she gets all the doses of IL2 she will be done tomorrow at 6:00.  She will have to stay in the hospital for at least 1 day after that.  We hope to be out of the hospital by Wednesday night.

We are very bored.  (although the art therapist did stop by and give me some Mandala to color.)

Josh

Sunday, July 27, 2014

Day 3-4

Alisa is doing as expected.  She gets sick after each dose of IL2.  Throws up, shivers all over, sleeps a lot.

Tries to eat, mostly just popsicles (that I mash up into a slushee).  Sometimes she tries cookies or rice krispy treats (not great coming back up)

She has had 7 doses of IL2 so far.  They said they wouldn't push it to the max (14 doses), so I am betting she will get 9 or 10.  Then she will stay in the hospital until her blood counts go up.

Josh

Friday, July 25, 2014

Day 1

in order to understand the next few days and the updates I think it is necessary to remind you all that at this point in her treatments most symptoms of being sick are good.

Alisa has been sick since they injected her cells yesterday.  after about an hour she had a fever of 102 and was pretty sick until about 3:00 AM (chills, fever, night sweats).  I didn't realize it till this morning but she was a bit loopy last night.  She requested a cinnamon roll at about 2:00AM, so I ran down to the little treat cart and got a rice crispy treat (she has been craving those this week) and a snickerdoodle cookie (closest thing to a cinnamon roll).  By the time I got back she was asleep.  This morning she was surprised to see treats waiting for her, didn't even remember asking.

She started IL2 this morning at 10:00 and had a second dose at 6:00.  She has been pretty miserable.  She gets the rigors (uncontrollable shaking/shivering, teeth chatter) about an hour after each dose, hen they give her enough drugs to stop shivering, and she is out for the next few hours.  She did throw up once. She will get another dose at 2:00 AM

Thanks for all your thoughts at prayers.

Josh

Thursday, July 24, 2014

day 0

They are in.  Feeling very fortunate.  The one disappointment was the number of cells they were able to grow.  When I say only 13 billion that seems kind of silly right?  That is just silly, so I will be happy with 13 billion cancer fighters already programed to attack my tumor.  It is a very good day.

TIL trial team. Dr, RN, patient, husband

Wednesday, July 23, 2014

day -1

When you have a transplant (bone marrow, stem cell, T-cell) they countdown to the day you will receive your new cells.  The countdown begins the day you start receiving your preparative regimen of chemo (in my case Thursday was day -7).  We will inject the T-cells on day 0.  And then we count up from there.

Somehow we are already at day -1.

These last few days have me feeling like I am in a negative space.  Only around and between real days.  All this sitting idly feeling lousy in a strange kind of prison.  But negative space in art is often as important as the object itself.

We had a visitor yesterday.  Troy lives here in Seattle and did the TIL trial at NIH two years ago.  He disease free because of it.  There are other stories like his that have me believing that this could be it.




While we were chatting with Troy and his wife I started talking funny. I had just had lunch and the chemo had just finished.  Josh pulled out the camera for the kids.  I thought it was a neurological complication that was going to leave me paralyzed.



Turns out it was just a swollen tongue from an allergic reaction.  Benedryl took care of it.  I was way cautious when ordering dinner, but was eating peanuts by the handfuls at bedtime.  I like to live on the edge a little.



Monday, July 21, 2014

I have taken a turn for the better now that the first chemo drug (Cytoxan) is flushing out of my system.  I even had a little breakfast.  They said my bone marrow has now been stopped and my neutrophils will start to decrease.  I now get one dose of the second chemo (Fludarabine) each day until Thursday when I am scheduled to get my T-cells back.  As I reminder, the chemo is not being used on the tumors I have, but to kill off my existing immune system to make room for my new super charged immune system.

Thank you so much for your kind thoughts and prayers.  I know everyone is curious how I'm feeling about all this.

It is strange to lay here with fight songs and angry energy pulsing through my veins.  Sometimes I feel like putting down something James (my 13 year old) would write up.  Something with explosives and tactics and blood and steel.  Something that makes you shut your eyes and turn your head.

But no.  In reality this fight is just the pulse of the IV pump.  A smile from the kindest nurses.  Josh working on his computer.  And my eyes lids drooping.  Maybe a barf here and there.

But in my head, I wish it was an air raid.  I want to see the damage.

I miss my kids and my summer.  I miss my bed and my dog.  But if this works we won't have to come back to this hospital, or stay at any other.  If it works the dog days of summer will never be spent indoors again.

Praying that this works.

From the tramp last week.  We had a bit of World Cup fever this last month.  Josh served a mission for our church in Argentina when they went to the world cup back in the 90's.  I'm not sure if I've mentioned his recent obsession to soccer, but the one thing he is worried about leaving for a month is his 9 year old soccer team.  I might have rolled my eyes at that one.