No worries

Discharged from the hospital and on the mend.  The first people to see me bald (outside of the bone marrow transplant unit) also saw me smiling.  Fresh air!

bad hair day

Yesterday was a rock bottom kind of day.  It seemed to be the peak of the chemotherapy and the IL-2 effects.  Fevers continued.  Fluid everywhere.  Mouth raw and esophagus burning.  Nausea.  Diarrhea. Itchy, red, irritated skin.  No sleep for days.  Feeling sick for almost weeks.  And then the hair started coming out by the handfuls.

That was when the girl on the floor who gets things done put me in a chair and got that pesky hair out of the way.  It was so all of the sudden.

We got video, but let's just say it's not one of those beautiful, triumphant moments of warrior preparing for battle.  I am like semi conscious and about to barf.  We can't get things from my camera onto my computer right now (seriously? haha) but trust me when I say it was just ugly. 

I think it's fitting that my gown didn't even have middle snaps on the sleeves that day.  Ultimate bad day.

They gave me a unit a blood at night and that did seem to pick me up a great deal.  I said a prayer for the person who donated that blood, it must have come from a very warm heart.  God bless.

Josh took me getting better as an opportunity to get the hair job done right.

Uneven, Josh could never live with this.

Of course the mohawk first

I think I make a cute 17 year old boy.

Josh keeps smiling at me and saying he thinks he's looking at a movie star.  I'm telling you there is no better husband.

I haven't really been sad about the hair yet.  I am not looking forward to having the lyphedema sleeves and the bald head-there's a lot to stare at there.  But you aren't bald for long.

I had a "Toast to Good Hair and Good Friends" party the night before I left.  So I got to say goodbye all those years of long hair with some of my best friends.  My sister did my hair and I think it turned out perfect.  I would love to show you pictures, but you know me and my technical difficulties.  :)

Well Jennie got a shot of the night, and look at that battery power!

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?

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

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

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

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