Friday, August 29, 2014

trial recap

Just need to barf up my experience in Seattle and then move on.  Because I have certainly moved on.  For those who worry, I am feeling great now.  The baldness is tricky, but that's another post.

Any melanoma patients who would like more details on the experience I would love to share.  I found it really helpful to talk to people who had been through it.  Just let me know.

We walked around Seattle together the night before we checked into the hospital.  I thought we would have lots of time to explore when we got discharged from the hospital, but that wasn't the case.  Glad we had one perfect evening.

Okay, let's get this party started.  University of Washington welcomes me.

My must haves for hospital stays are simply a family photo and my own pillow.

Waiting for things to start.  Do I look like I have cancer?  I don't feel like I have cancer.

I was pretty obsessed with my hair in the hospital.  Unfortunately I left all my hair care products (moose needed for curly hair and a round brush for straight) at home.  I loved what I had anyway.  Here I show off one of my white streaks.

I've learned from a few bad experiences with PICC line insertions (where they thread a catheter from your upper arm to your heart) to ask for something to make me less aware of what's happening (ativan) before they start the proceeder.  It's a good thing I did, this one was horrible.  A ton of pushing and shoving to no avail.  They finally had to use a peripheral IV for the chemo that night and place the PICC using cameras the next day.  Oh well, I had a pretty relaxed afternoon!

Ready for the fight.  Chemo in.  Fascination with my hair leads to lots of selfies.

Barfing starts here, and will continue more or less throughout the stay.  Josh says it's in my head.  I really think it could be.  You associate on thing with another and it's hard to separate them.  Nausea and hospitals go hand in hand for me.  The first chemo I got was rough immediately for me.

Whenever I would feel okay I would walk the narrow halls.  I had to stay on the bone marrow transplant floor.  I felt very confined.  Random doctors would praise me for walking so much, but I would have gone crazy if I stayed in the room.  I went crazy anyway, but this helped a lot.

Chemo is interesting stuff.  Generally, it kills the fast growing cells in your body.  Cancer is fast growing, so in some cancers chemo is very effective (not true for melanoma).  Blood cells are fast growing (which is what we were targeting in the trial), hair of course (which is why you loose it), and the lining of your GI tract.  The GI tract part is kind of miserable.  

Every night I made Josh climb in bed with me and watch a sad show.  Sad shows make me feel better sometimes.

The day has arrived!  They had just broke the news to me that the lab was only able to grow 13 billion cells.  I tried my hardest to smile, feeling 100 billion cells short (that's 11 zeros I think).

Sometimes we would switch places just for a change of scenery.  I wonder if I was on the other end of this how I would handle it.  So many times during our stay he would say "This is such a great vacation Babe!"  And I would try and talk some sense into him, but he maintained that he was having a good time.  Every day he would go exercise, but other than that he was as confined as I was.  He worked all day and held my hair back while I threw up and got me warm blankets when I needed them and put up with all my bad moods.  He slept in uncomfortable beds and lived with the constant sound of machines.  Never complained.  Sometimes I think he's superhuman.  

I think I complained whenever I was awake.  When he was on the phone I had to be quiet.  Luckily there was always a window to look out.

The day after the TIL cells were infused we transferred to the ICU for the IL-2 part of the trial.  It was twice the size of our first room and had a much better and bigger view.  This was a good change.

IL-2 begins.  IL-2 sets off a massive immune response in your body.  When I did this treatment a couple years ago it was a different experience, most likely because I had more of an immune system to attack my body.  It was miserable even still this time.  The fevers and uncontrollable shaking were the worst part of it for me.

Plus the chemo side effects.

Many hours of sleep.

We loved having visitors.  This is Josh (our High School friend) and his wife.  Josh ran his share of errands for my Josh, thanks Josh!
Getting sick is getting old.

I loved getting texts from the kids while I was away.  Luke just needed to say hi all the time.  I can't believe how much I missed them.

This one made me laugh.  I had to call him to see why he was texting me about the dryer.  Surely there was a hidden meaning.  Nope, he just thought I would like to know that the dryer was done.

This was the best.  As if!!!  This is a Grandma Vicki gift for sure.  That closet has never been cleaned out.

A lego flower bed that spells mom.

From this..

To this.  I always had to give myself "tummy time" as I spent a lot of time on my back.

Feeling the worst ever.  All the symptoms all at once.  Wanted to run away.  Wouldn't have minded dying.  Mad at Josh for letting me go through with this.  Cursing my decision making.

Blood made all the difference for me.  Does that make me a vampire?

Josh looks like a hairy beast at this point.


Selfies not so fun anymore.

Still walking the halls after 12 doses of IL-2.  That's crazy!  I normally would not have been able to stand up without blacking out after 6 doses.  My blood pressure would be a low mess, my lungs filled with fluid.  My kidneys would have been shut down, and I would have gained 20+ pounds of water.  Josh said I mentally was not doing great.  These drugs play with your mind.

He was woken by a dream that they were calling his name over the hospital P.A. system.  2 weeks in the hospital felt like a month at least.

So smiley and and happy to be getting out of there!  I saw some awful things in the halls of this unit.  There are degrees of suffering, and compared to others mine was very minor.  And it was short.  I think there are people in the unit who have to stay months.  I don't know how they do it.  I wish so badly they didn't have to.  I will always pray for those in a hospital.  Bless their hearts!

The cancer center gave me a free wig and a hat.  I went with long blondish.

Josh in my other wig, gave me a good laugh.

We tried to get out a couple of days, but I was just sick.  Didn't enjoy it at all.  All that sunshine wasted!  Mostly in Seattle I just went around bald.  I didn't even get stared at.  I think people just thought I was a bold chick.  It wouldn't go over that way in Utah County.  

This was my first happy day in Seattle, at the end of our journey.  My old roommates Natalee and Melissa came for the afternoon and it did wonders for my spirits.  Loved them 15+ years ago and love them the same now.  Thank you!!

I would do this treatment again in a heartbeat.  It was the opposite of fun, but it was very doable.  You couldn't have gotten that response out of me during the treatment, but now that I look back...

My stomach is all in knots about the results we will get next week.  Of course I will keep you informed.


  1. I have waited ages for that post! Let's hope we can quit playing phone tag soon, ya? You are the toughest girl I know. ❤️

  2. Still praying for you in Oregon... holding you close as you wait for your results from the trial. God bless you. Come on Miracle... we are waiting for you! Love and hope for your cure, Gretchen Gear

  3. I love that Josh and Ashlee came to see you guys!! I didn't know they lived up there! Sometimes I look back at what I've been through (which is a mere fraction to what you have done) and can't believe I made it through. You are amazing! Cannot wait for the results...they will be great!

  4. So glad you are feeling well again, Alisa. What a battle you are engaged in. Truly you are brave, and full of faith. It is so evident in how you live. We love you so. Keeping our prayers and love coming your way.

  5. Bravo Alisa! So brave, so full of heart. Love you

  6. You are beautiful and amazing!!! I love reading your blogs. You amaze me at your attitude. Thanks for keeping us informed. I saw you from a distance at back to school night and you looked so cute.

  7. You are a rock star (and now you look like one too :)). I love you girl. And Josh too. You guys are so fun. Miss you and always parlaying for you.

  8. Wow, I'm amazed at your courage!

  9. You are not alone with the knots in your stomach... those of us praying for you in Oregon are with you in Spirit. Please God...


  10. I love the bald. Love it. After 100 mile races they give you a belt buckle. Not a medal, a belt buckle. Different, I know. But people wear those buckles and it reminds them how strong they are to have survived those 100 miles. When someone sees a runner wearing a buckle, they can't know the trials that runner went through but they respect that it must have been a very difficult journey. That's the way I see people who are bald after chemo. It's like a badge of honor that you have fought something so challenging that nobody else will truly understand. It shows your determination, strength, and courage. I am proud to call you my friend.

  11. Thanks for sharing all of this! I love you and you are beautiful with or without hair, really! Josh, however, better without the wig! :-)

  12. I love everything about this and relate to so much of what you wrote. You are truly beautiful with or without hair, inside and out!

    I am so happy for your good news, I cried today! And I haven't even met you yet. ;) Keep fighting and praying like your life depends on it. God is definitely a God of miracles! You are blessed!!