Just wanted to give a quick update.  Things are going okay.  I saw the doctor a couple of weeks ago and we decided to cut the dosage of medication because of the chills and night sweats.  It has helped.  I have only been waking up two or three times a night to change my clothes and bedding, and the chills are much less severe.  I still feel cold almost always.  My feet hurt to walk on.  In the morning it's like someone has thrown glass all over the floor, and I have to get the kitchen.  I have random painful red bumps appearing and disappearing all down my legs.  Both legs are swollen by the end of the day.  And I generally just don't feel 100%.  I am just over the first cold that I can remember since I started immunotherapy almost 3 years ago.  My blood counts are still a little low from the TIL, so maybe that's why I couldn't fight it off.  This cold came with a cough that was so strong it made me throw up.  Josh slept on the couch because things were just ugly at night.  Luckily he is back, and thank goodness he leaves at 5 in the morning, because that's the only dry spot in bed and it suddenly becomes mine.

I have been a little bummed about my health lately.  I was offered a trip this month.  I know he will be embarrassed that I'm mentioning it, but Josh's brother Mike opened up the world to us and said pick a place, any place.  Like my own Make-a-Wish granter.  I tried to think of somewhere.  I wanted to be warm.  Sun would be tricky (my lips have blistered like crazy after 10 minutes of forgetting to cover them outside), and even slathered in sunscreen and a wide brimmed hat-in a swimsuit I look like I have some communicable disease with these red spots on my legs.  Italy sounded amazing, but do I really want to use that up in the winter?  And how big of beds do they have in Europe, and how many towels per night can I wipe down my dripping body with?  And how will I clean all those wet clothes?  And what if I can't keep going all day like I would want to?  And how will I keep my medicine in the refrigerated during a trip?

And so, it didn't happen (he says I can take a raincheck, so no worries).  There is nowhere I can hide from the disease.  There is no escape right now.  Not even in sleep, which has always been my relief.  I have been having nightmares again, I don't know if it's because my sleep is so interrupted or if it's because I drew a line at the BRAF inhibitors and said at that point things will be bad, and here I am, and in my mind things are bad, so I come up with scary stories to tell myself while I sleep.  I don't know.

During the day things don't seem that bad.  I have been trying hard to find appropriate gratitude for the drugs I'm taking.  I found it in my own words here at the end of the post.  Someone handed me months of extra life.  In pill form.  I'm so lucky I've been around these three years to watch my kids grow up.  It's crazy to think we are spinning around the sun at the same speed.  They change so quickly, and Josh and I are stuck at 22 (ha!).  I'm just so grateful for this bonus life, I know I'm lucky to be here.  I feel really lucky to be here.  More than mad at the disease, and disappointed that things aren't turning out how I planned, I feel deep down very lucky.

a heart for any fate

They put me back on the full dose Monday, and so far, so good.  I don't really feel sick at all.  Only the night sweats remain, and that's only happening a couple times a night.  Knock on wood.

We will scan again after Christmas and see what's next.  There is a chance these drugs get rid of my tumors all together.  In most, the benefits (even the complete disappearance of tumors) are short lived.

And so I am a little confused as to how I approach what time I have left.  It could be years (please!).  It could be much shorter.  I really have no way of knowing.  I would say that most people I have followed who have taken the BRAF drugs usually live about a year.  There are stories that don't follow this narrative (thank goodness), and we now have more drugs to try after I fail these then they have had in the past.  And of course everyone's responses are just so different, I don't know how fair it is to compare.

But sometimes the reality that I have tried all the best treatments on this tumor hits hard.  I wish I had a strong gut feeling here as to what is going to happen.  Even if I did, I think my gut feeling has been wrong so many times that I just don't trust it like I used to.  I've been mourning that loss of trust since my scans.  I really, truly believed that my cancer was on it's way out.

I've been in this what-to-do-with-my-time-left quandary before.  There is an answer.  I think Longfellow has a pretty good grasp on it.  James memorized this poem a couple of years ago for school, and it spoke out to me.  I just need to press on.

P.S.  Luke just memorized "In Flanders Fields" for Veterans Day and my heart literally skipped a beat when he sweetly said, "We lived, felt dawn, saw sunset glow, Loved and were loved..."  Poetry from your child's lips (especially when the pauses are not in the right place) is a pretty sweet thing.

A Psalm of Life

Henry wadsworth longfellow

Tell me not, in mournful numbers,

   Life is but an empty dream!

For the soul is dead that slumbers,

   And things are not what they seem.

Life is real! Life is earnest!

   And the grave is not its goal;

Dust thou art, to dust returnest,

   Was not spoken of the soul.

Not enjoyment, and not sorrow,

   Is our destined end or way;

But to act, that each to-morrow

   Find us farther than to-day.

Art is long, and Time is fleeting,

   And our hearts, though stout and brave,

Still, like muffled drums, are beating

   Funeral marches to the grave.

In the world’s broad field of battle,

   In the bivouac of Life,

Be not like dumb, driven cattle!

   Be a hero in the strife!

Trust no Future, howe’er pleasant!

   Let the dead Past bury its dead!

Act,— act in the living Present!

   Heart within, and God o’erhead!

Lives of great men all remind us

   We can make our lives sublime,

And, departing, leave behind us

   Footprints on the sands of time;

Footprints, that perhaps another,

   Sailing o’er life’s solemn main,

A forlorn and shipwrecked brother,

   Seeing, shall take heart again.

Let us, then, be up and doing,

   With a heart for any fate;

Still achieving, still pursuing,

   Learn to labor and to wait.

I've had so many people ask how I'm doing.  I hate to complain, but let's be honest: The new medications are giving me grief.  

The first few days I had no side effects, and the pain from my tumor disappeared.  I could laugh as hard as I wanted to.  I was so relieved.  Big deep breathes.

This week I developed red painful spots all over my lower body and upper arms.  My joints have been acting very old (painful).  This seems to come and go.  I started having fevers at night, major chills even when I didn't have a fever.  Barfing here and there.  My feet hurt to walk on.  One of the worst side effects has been sweating the bed every time I fall asleep.  Even after an exhausting night (changing my clothes and bedding 5 times), I get the kids to school and doze off, and immediately wake up freezing with big beads of sweat all over my skin from head to toe.  Sleep deprivation sucks.

So I called the doctor yesterday and I am taking a couple days off the drug and we can decide if we need to lessen the dose when I start back up next week.  This is a pretty typical scenario, it seems like most people are not able to tolerate the full dose.  A lot of the time the side effects wear off eventually, so I guess we will just see what happens.  

This has kind of taken me by surprise, as I thought the side effects would be pretty manageable with Ibuprofen.  And most things are not that bothersome, but when I can't get the fevers and shaking down with the medicine, it's just miserable.  

The other night the shaking started early enough for my kids to witness.  I hate being sick, but I really hate being sick around people.  And I really hate being sick around those people.   They are very concerned, bless their hearts.

Sam dug out the electric blanket, wrapped mu p, and held me really tight , trying to control my shaking.  Luke made me hot herbal tea and warmed up his rice warmer for my feet.  James played Christmas songs for me so I could keep my mind off the misery.  I think I'm in pretty good hands.

My family has helped me out a lot this week, and Josh is beyond helpful.  My kids are absolutely the easiest, funnest, most darling things on earth.  We have lots of strength and faith to draw from yet.

bitter pills to swallow

It's done.  I just took my first dose of the BRAF and MEK inhibitors.  I have been dragging my feet a little on this one.  It turned out I needed a baseline brain MRI before I could start the drugs, and they couldn't get me in until today.  I was happy for the delay.

I have had some time to research my options (or figure out if I had any).  I communicated with several doctors around the country.  The consensus is that this should be my next step.  I also asked some people to share long-term success stories after taking these medications.  They are out there.  Good stories are out there.

The drugs are dang effective.  I can't really wrap my head around how exactly they work.  From what I understand, they block a pathway the cancer needs to make a certain protein? These drugs are called targeted therapies.  They don't work like a chemotherapy or immune therapy.  According to the information that came out earlier this year (when the combination of these two drugs were FDA approved), 76% of patients have a response.  Some of those responses are quite dramatic and happen within days of taking the pills.  The median duration of the response is 10.5 months.

Which brings me to the reason I have saved these drugs for last.  Eventually, the body finds a way around the blocked pathways and becomes resistant to the drug.  There are numerous stories that once the body figures that out, the cancer comes back with a vengeance, giving the patient very little time at that point.  These stories are not what I would call few and far between.  I worry this will mess with my chance for a complete and long term response.

For years now I have refused these drugs based on the great responses that my cancer has had to immunotherapies.  I believed we could cure this with that approach.

But it looks like I need to try a different route for a while here.  I don't know why this always has to be a nail-biter with me, but to be honest, I'm having pain now from the tumor.  Ibuprofen has been enough on most days, but there have been two nights where I have had to take pain pills.

It hurts to put my right leg into pants.  It hurts to twist my body.  It hurts to run or jump.  It hurts to take a deep breathe.  It really hurts to laugh.

So for the first time in almost 3 years I'm okay with taking the targeting therapies.  Not only will they take away the pain, but I will have many other options available once I've tried these drugs (most trials I'm looking at require that you have tried these drugs, and my Florida drug will be available after I'm on these as well).  And of course there is the chance that I respond to them for a long time.

So, we move forward.  The side effect profile for this class of drugs includes fevers, fatigue, diarrhea, arthritic pains, skin rashes, and hair thinning.  I really don't know how I will react so we will see how it goes.  Thank you for your prayers in our behalf.  We are doing just fine.  It really is amazing when we get to an obstacle that seemed insurmountable before, it turns out to feel like just another bump in the road.  We can do hard things.

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.

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.

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?

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.

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.