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

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.

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. 

Sunday - No Change

Sorry about the delay in updating you all.  I guess there is nothing to exciting to report. 

Alisa is still either sick (nauseous) or sleeping.  She has switched to the second medicine for chemo.  she gets up and walks around a few times each day.  She is pretty miserable, but I guess that is what we expected,

We will continue on this routine for another 3 days and then will be transferred to the ICU floor for the IL2 phase of the treatment.

I will try and keep you better informed as we proceed.

-Josh

Day 2

Alisa received her first dose of chemo last night at 11:00.  They had some trouble getting her PICC line in and had to do the first dose through an ordinary IV line in her right hand (ask a nurse to explain any of this that doesn't make sense).  it was either that or a jugular central line.

She has been sick since last night.  Symptoms include:

• Wasabi Effect - her eyes and nose burn while she is receiving the chemo-therapy (like she ate wasabi, hence the name.)
• Nausea - They said she would not be too sick for 2-3 days, it started almost immediately.  I think maybe it is just in her head.  She did say she was feeling nauseous since she walked into the hospital.  I guess once you spend a certain amount of time sick in a hospital, just being here makes you sick.

She also just got back from intervention radiology (not sure that is the right name, but something like that.)  The PICC nurse couldn't get her line in all the way yesterday so she was referred to the department that can get a better view of why the PICC is blocked and get it through to the heart. Well that is done (good thing we are not paying for this, see post from yesterday.)

At this point she is either asleep, or throwing up.

-Josh

Our decision to move forward with TIL

Just wanted to write down some details of our stressful decision.

When we got the word of progression from our last scans the doctor said my best options were the TIL trial or the Braf drugs.  I have always said no to the braf drugs until I absolutely need them (they usually work well, but for a short period of time).  The doctor thought we could try surgically removing the tumors after the BRAF had shrunk them, or start on something else like AntiPD-1 (the drug I got in Florida that will be FDA approved this fall) before the braf started to fail.

I said for sure we do the TIL.  And then we got going with the process.  The insurance denied coverage.  We appealed, they denied again.  We got an estimate for our cost as self pay.  One hundred and eighty nine thousand dollars.  Best case scenario.

So we wrestled with that a bunch.  With questions like "What would that kind of money do for hungry children in the world?"  I think I made peace with the enormous amount thinking anyone would use whatever he had to save his family member.

 p.s. I created the title (Josh) so forgive the lack of creativity.  my job was to get the video uploaded

happening

This has been a very stressful week.  It has been the hardest decision yet.  We have changed our minds a hundred times.  In the end, we decided to start the TIL trial tomorrow.  

I am very sad and mad that nothing has been able to stop this tumor.  I don't understand.  What I do know is that I prayed at the beginning of my trouble to be able to try everything, and so far the prayers have been answered.  I am grateful for every chance I get to beat this truly horrible disease.  

Thank you for your thoughts and prayers.  We will be in great need of divine comfort and help over the next few weeks.  We are planning on updating the blog daily.

Yesterday they pulled my cells out of the freezer in Seattle.  It's not a for sure thing until the stuff is running through my veins.  But it will likely happen, and it will likely happen next Thursday.

I have to have another scan before I head down there.  If the scan shows significant growth into my duodenum it may be too risky to do the therapy.  They are worried about that area because if the tumor has reached through to the other side, and if I had some colitis, let's just say it could get ugly.  If a hole was torn through the bowel and I had no immune system to fight off the crap leaking out, we are talking about a potentially fatal scenario.  So they are being cautious.  But we think it will be okay, and are planning that there will be minimal growth.

I am scheduled to be admitted to the hospital on the 17th.  I will start the lymphodepletion phase of the trial that day, where they start killing off my immune system with a couple of chemotherapy drugs.  It should make me nauseous and tired, but they say I will be pretty bored that week.  In the meantime they will be growing my tumor fighting lymphocytes (the cells they took from my armpit tumor), which are now in the millions, to the billions.  They will be put into one bag and infused when my immune system is effectively destroyed.  Then they give you IL-2 to boost your new immune system.  Remember those days in 2012? I don't think people take as many doses, but you are already sick from the chemo so I'm sure it's not picnic.

After you recover from the IL-2 and your blood counts come up you are done.  It could be a little as a 2 week hospital stay (I've also heard of people staying 4 weeks).  They want me to stay up in Seattle for 4 weeks even if I do get the shorter hospital stay, as there are some complications that could arise and they usually happen in that time frame.  

I am nervous about a few things.  Complications are highest on the list.  There are some people who seem to go downhill pretty quickly if things go wrong.  I will spare you the details.  And then the bowel risk, but I feel like that will be okay.  I try really hard not to worry about the money, but the insurance has denied our appeal and it is going to cost a ton.  We will see when it all shakes out, but the best case scenario is just so much money.  I worry about killing off this immune system, I have so much confidence in it, but it isn't working right now where I need it to be working, and I am getting my own T-cells back so that makes it okay.

I am excited about a couple of things.  There is a 50% chance that I will get some sort of response (tumor regression or stabilization).  There is about a 20% chance that I will get a complete response (all my cancer will disappear).  That is a pretty big prize.  I have been after it for years.  This could work, and sometimes it seems like no sacrifice is big enough just for the chance at remission.  

I will keep you posted.

second and third opinions

Appointments went well today.  There is major concern with surgery in the area.  Basically the kidney and liver need to be sliced, which is not a big deal, but the area near the duodenum could be dangerous.  Most sections of bowel are pretty easy to cut out. The section my tumor is invading is the section where the bile and pancreatic ducts join the digestion party.  The duodenum shares blood supply with the pancreas, so if it needed to come out, so would the head of my pancreas.  The area has been radiated, which will make everything trickier (I guess it kind of sticks things together, maybe a little like scar tissue?  I don't understand perfectly).  In the worst case scenario it would be a Whipple procedure a nephrectomy and a little liver dissection.  With the complication rate as high as 75%, and as 5-10% of complications not being fixable (you die), they are recommending I try something else.  Of course they would do this if this was my last option.  I may end up doing this at some point anyway if we can't shrink this tumor.

So.  I have the weekend to make peace with what I heard today.  It is strange to see surgeons hesitate.  They are so capable and bold and brave.

I talked to my Dad's friend, a retired surgeon, and I really appreciated his reminder that in the end, this is in God's hands.  I make the best decision I can, and God will sustain that decision.  And then what will happen will happen.

I will do my part.  I will research.  I will pray.  I will try my hardest.  I will think positive.  I will role with the punches.  I will try not to worry my life away.

And I will have a plan.  And I will be okay.

spartan beast

Saturday was a big day for Josh.  In December his friends invited him to do a Spartan race with them.  It is a 13 mile run with a bunch of obstacles throughout the course.  Josh decided he was going to run the race for me.  Shave my name in his hair and use me as his inspiration to keep going.

Such great friends.  McKay, Davy, Josh, Matt, Drew, and my favorite Ashly. 

Since December he has lost 15 pounds.  He has worked out almost every day, and many days twice a day.  He changed his diet.  He ate less and ate healthier.

He changed his lifestyle.  If you have ever done this or tried to do this, you know how hard it is.

  

It has been a very inspiring transformation.  I seldom cry, but there were a few tears as he finished a great race.  Josh is such a champ.  He puts all he has into things.  He is a positive person.  He works hard.  He doesn't let things get to him for long.  He is the kind of guy that can handle a difficult situation.  Sometimes that comforts me, and sometimes it worries me.

I couldn't help but think of F. Scott Fitzgerald's quote, "Show me a hero and I will write you a tragedy."  

Josh and McKay.  They aren't really running straight uphill, I just can't get this picture rotated (seriously?).

She did keep asking him if it hurt.

Josh cuts his own hair (it's not terribly complicated ;), but splurged and went to the barber before the race.  He asked the stylist  if she would shave a name in the back of his hair.  She said she never had before, but she thought she could.  That was the point where he should have backed out.  Not only does it look like a second grader's handwriting, it was bleeding.  We'll see if it scars.  Sorry Josh's next wife!  Ha!