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. 

Sunday, July 20, 2014

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

Friday, July 18, 2014

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

Thursday, July 17, 2014

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

Wednesday, July 16, 2014

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.

Wednesday, July 9, 2014

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.

Thursday, July 3, 2014

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.