Wednesday, October 15, 2014

scan results

I really don't want to admit it, but the tumor is growing.  This is what we saw yesterday.

Compare this to the pictures below.  It just looks nasty now.  The radiologist used the word "engulfing."

And so, we look for another treatment.  My first choice would be the Anti-PD1 drug that was just approved in last couple of months.  This is the drug I was getting on trial in Florida.  It was helping with this tumor.  It has been approved only for second line treatment.  Meaning the patient has to have tried IPI (Yervoy) and the Braf drugs before insurance will pay for it.  This is a serious blow.  I think I heard $15,000 a month, which just isn't feasible.  

So the plan is to start the BRAF drugs.  They are pills taken twice a day at home.  I will take two different kinds.  The response rate is 75%.  They work for an average of 6 months.  If we can shrink this bad boy enough we could take it out surgically.  If the BRAF drugs do not work we could then move onto the PD-1 drugs.  

I honestly believed yesterday morning that I was on my way to a cure.  This disappointment is one of my biggest yet.  I keep getting so close! 

As the insurance approval comes through I have a little time to make sure this is the right direction.  There are many side-effects to these drugs, one that seems universal is extreme photosensitivity.  Hoping to find a sunny spot to take the boys for a couple days before this all starts.  I'm sure to be back in the ring by then, but on the cloudy day I think I'll just try and pull myself together.  Roll with the punches, Alisa.

Thursday, October 2, 2014

september

Several years ago my neighbor came home from a California vacation.  He raved about how much fun they had had, how perfect the weather had been, and how hard it was to come back home.  In the background of this conversation were mountains blanketed with orange and yellow.  The grass was still green and soft.  The zinnias vibrant pink and orange, and the sky a neon blue.  Cool enough for a jacket, but warm enough for short sleeves too: whatever you looked good in was just right for the day.  I remarked that luckily it was September in Utah so the transition should be an easy one.  He said, "I can't enjoy the fall because I know what's coming."

One marvelous miracle about cancer is the simple appreciation it has given me for the now.  Regardless of what is ahead, I have today and all it's beauties.  I can enjoy days or moments or weeks for just what they are and not what they could be or will be.  

And in September this is the easiest.  This September particularly.

Here are some of the good things of the month captured on my phone:


Sept. 2nd.  My dad brought over my mom's famous cherry pie before the big scan results.  I had pie for breakfast for two weeks.  I know that is very wrong, but it brought me all kind of joy in the mornings. 
  This is before the TIL trial.  The tumor is on the left, right under the liver, dark and invading.
Sept. 3rd.  The tumor is smaller and less menacing.  The pictures aren't exactly on the same plane, but pretty close.

Happy day at the Huntsman!!!  Cannot believe my luck.




Sept. 6th.  Ginger plays at the net.

Finally some fuzz on top.  You should see it now, it's growing like crazy.

Apple picking at Grandma's house.

Sept. 7th.  We love all our garden produce around here in September.  Eating healthy is just natural right now (unless a pie shows up on your counter).

Sept. 7th.  My sister Kari found monarch caterpillars in her front yard this year.  I remember watching this magic in my grandma's basement as a child.  This day we had a caterpillar, a chrysalis, and a fresh butterfly.

Miracle.

Sept. 7th.  My lover of outdoors, free time, nature, and fall.  Sam has had a great month.

Football season and the Cougars are winning.  Josh has also had a great month. 

Many evenings at the rope swing.
Sept. 12th.  Josh turn 35!

I think they stood by him stiffly for a picture so I said, "Come on, at least touch him!"  This is what you get.

Sept. 13th.  How can we get kids to bed on time on nights like these?
Sometimes when the boys are in school we come out side to smell the air and watch the clouds.

Sept. 14th.  A dinner in the mountains.






Sept. 20th.  A Cache Valley Utah sunrise.  This is where I grew up.  It still feels like home.

Josh did the Top of Utah Marathon (his first!).  He not only stayed with the pacer, but talked to him almost the whole way!  His wife had cancer and so they had that bond.  Josh said he wasn't tired until the last mile.  What the heck?  

If you need some inspiration, go cheer at the finishing line of a marathon.  Very cool.

This is usually what I wear on my head, by the way.  A scarf and then a hat.  Places like church I will wear my wig, I didn't have any pictures of that to pull up. 

Sept. 22nd.

Pastel, patchy mornings.

Sept. 27th.  Weekend with the cousins.  Rainy day exercise at Josh's yoga studio.

Sept. 28th.  This is what Josh gets for sleeping during church.  Luckily he tried to cross his legs and discovered the prank before he had to walk up to the pulpit to say the closing prayer.
Sept. 30th.  September is queen of the year, and this was her crown.




Monday, September 15, 2014

alopecia

Last week the top of my head started to look blurry in the mirror.  My hair has finally started to grow again.

I wish I could say just how I feel about my baldness.  Do I like people knowing what I am going through?  No.  But not no exactly.  This is the first time in over 7 years of the cancer battle that I have lost my hair.  I have at times felt like an impostor.  I looked as good and as normal and as healthy (or so I think) as the woman sitting on the park bench with me, smiling at her kids the same way I was smiling at mine.  She might ask me how I'm doing and I might say fine.  We might talk about our kids and our day and I might leave out that I spent the night barfing from my chemo that has a fat chance of helping with the tumors I have popping up all over my brain.  The grocery store clerk asks genuinely how my day has been, just hours after I getting the results that the cancer is spreading, and I would disingenuously answer, "Great!"

But it was all believable because I looked very normal.

Now everyone knows there is something wrong with me.  Maybe they don't understand how serious or how long of a fight I've had, but they know I'm in the middle of a something terrible.

And so they are kind.  And sometimes awkward.  And they do seem to smile with sympathy.  And a few people you can almost tell have been touched by the same disease.  And usually they are the ones that will strike up a conversation about it.

But would you like your problems to be written on your forehead?  On one hand you would get more respect and understanding (or maybe rarely the opposite).  On the other hand you just want to be treated like everyone else.

It is also just not cute.  I have been fortunate enough to keep my eyebrows, and at least some of my my eyelashes.  But without some mascara and some eyeliner I look pretty scary.  When I walk by the mirror in the morning, out of the corner of my eye I catch Lord Voldemort following me and I have to suppress a scream.

I don't really know that that is what bothers me though.

I think it's feeling normal inside, but the outside telling a different story.  Maybe it's the true story and one I don't want to be told.



There is one wonderful thing: warm raindrops on the skin at the top of my body.  Pure Poetry.

I guess two things.  I haven't picked up my razor for a couple of months.  :)

How have you or your loved ones dealt with hair loss?

Wednesday, September 3, 2014

again

Hugs and tears with my Nurse Practitioner in the office today.  Of joy!!!

The final word from the radiologist:

The tumor shrunk by 25%.  What does it mean?  It has the potential to keep shrinking into nothing, to potentially cure me.  Or it could start growing again.  But today I have forgot how to doubt.
Today this is my cure and September is before me.

Thank you for all the thoughts and prayers.  Our God is a God of miracles.  I am one lucky and undeserving girl.

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.

Interesting...


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.