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.

Sunday, August 10, 2014

Things are going well here at home.  I feel almost back to normal.  A little nauseous and weak, but that's about it.  I guess it will take a couple months for my blood counts to return to normal, so I'm to be a little cautious of communicable disease and infection.  I'm on a daily antiviral, antibiotic, and antifungal just in case.  

I love that my kid's friends will just come out and asked if 'it' worked.  Wouldn't we all like to know!  I will find out in September (sometime around the 4th, we don't have a date for the scan yet).  It either kind of works immediately or it doesn't work at all.  I do have a disadvantage with the number of cells they were able to grow.  They try to get 50-150 billion cells.  They were only able to grow 13 billion for me, as some of the cell lines started dying off while they were expanding them.  As long as the cells that kept growing are the ones that can kill the cancer, this could still work.  If I had 100 billion more cells I would have a greater chance at getting just the right killer cells.  I haven't dared look at the articles I've read in the past about predicting a response, but I don't remember anyone with low cell numbers responding.  That is not to say it can't happen.  Jesus fed 5,000 with 5 loaves of bread and 2 small fish.  I think I've been reading too many medical journals and not enough Bible.  

There is that horrible fever I got right after they put my cells back in me.  That is the one thing that gives me hope.  And the fact that I have responded in some way to everything so far, so why not this?



We had Jess Curren of Picture Me Mine Photography take some photos before I went to Seattle.  Ginger is always the star.


I am pretty fond of the white stripes in my hair.  In my bald head they look like while splotches of skin, so the stripes will be back.


Growing up way too fast.
I loved having hair.  Hair is the best.








Tuesday, August 5, 2014

there.is.no.place.like.home

Josh and I are so very grateful to be home.  How lovely to sit on the porch and watch the golden sun go down and to smell the garden after the rain and put my robe on and tuck my kids in bed and snuggle with my dog and open the windows to hear the crickets chirp.  

"Happy to be here" to a new level.

Again I feel the rushing feelings of gratitude invading my every thought.  I will sleep on those thoughts and expect very sweet dreams indeed.  

Monday, August 4, 2014

We are all set to be home Tuesday evening.  I took a turn for the better when my old roommates came for a visit yesterday.  Good for the soul.  My blood work is rebounding nicely and I am feeling okay.  Thanks again for all the love.

Saturday, August 2, 2014

I wanted to give a quick update.  I am still feeling the effects of the chemo, mainly nausea, which is proving resistant to all my efforts.  What energy I have I use going to the hospital twice a day (a total of 4 hours) for an antibiotic infusion.  One of my blood cultures in the hospital came back positive for bacteria, so they left my PICC line in and we have to finish out this course of Vancomycin.  My last dose will be Monday night and then there is a possibility of heading home if everything else looks good.  I am so planning on that.  Being away from my kids is getting harder.  Sometimes it is all overwhelming.  Thank you for all your prayers and kindness, at least I have that.