angles landing

Last week Josh had a conference in Las Vegas for a couple of days.  I was supposed to be enjoying myself while he was in classes, but I just kept thinking about how I wanted to be home putting in a garden.  I guess I'm getting old.

Best part of the trip was a stop at Zion National Park to hike Angles Landing.  Utah is kind of amazing.

Downpour on our way up.

Those are drop offs on either side.  I thought I was afraid of heights but this didn't phase me.

The trail.  The view is at the top.

And what a view!  We were up on the top for a good half hour and no one ever came to take a picture of us.  We got some really awkward shots with the timer. 

A little bit better, but we are still laughing.

When your husband gets skinnier than you-hide half of yourself behind him.

Sun damage

Matching hats great for rain and sun.  It is pretty easy to stay sun safe when my arms and legs are always covered.  Just put on a hat and no sun block needed!  This hat would make a great Father's Day present (REI).

My urban cowboy.  So cute!

luke prays for me

Tonight was my night to say the prayer (the date ends in a 4.  Josh prays when it ends in a 5, James on a 3, etc.).  "Can't you say it for me Josh?  I swear it's always my turn and never your turn.  And you've been gone all week!"  "It's your night."  Josh reasons.  "I said it in Sunday school today."  "And it was so beautiful I want to hear you say another one."  He says smiling at me.  But it was an 'I'm going to win this' kind of a smile. "It's my night more than anyone else's!"

"That's a 2 year old's argument Mom!"  James chides.
"You need the blessings Mom!"  Sam pleads. 
"I'll say it for you."  Luke offers.
"Thank you Luke!"  I look smugly at Josh.  Ha!

"Dear Heavenly Father, thank you for this beautiful day and for all our blessings.  Please bless Charlotte and Sister Boyle and Brother Vanderveur and Stockton and Mom that their cancer will go away.  Please bless that Mom will get the blessings from saying the prayer, because it is her night.  Amen."

Amen.

today

The Linton's are doing really very well.  Spring is so contagious.  We feel in our bones what the world is whispering around us.  Hope, Renewal, Life, Beauty, God.  All manifest in a blossoming tree.

So lovely to be a part of it all.

I am feeling just great.  I am everyday surprised that I am in no pain.  The only complaint I have is with my arm.  The few days of heat we've experienced have reminded me how difficult lymphedema is in the summer.  And I do wonder what I will wear during those months as I now have to wear compression sleeves on my arm and leg.  But I guess when you are stressed by the what to wear question, your life is just not all that bad.

I feel like I need to share more.  Share my happiness and my testimony and my miracle.  I am most interesting in sharing with my boys, and I'm afraid I have not been good at writing anything down lately.  I will surely regret that.

So I am starting today.

Just today:

I went running with Ginger as soon as the boys left for school.  Actually I ended up walking mostly because I am very out of shape.  Ginger met cows for the first time and she was not at all impressed.

Lehi in the spring

I came home and picked up the house.  Josh has been out of town all week for business and I have not been cleaning or cooking (my boys ate home-made refried bean burritos for 5 days this week).

I got bored of cleaning before I finished, so I called to chat with my BFF from college.  Her voice always makes me happy.  She didn't mention that she was going to show up at her daughters'gorilla report dressed as a gorilla.  I saw this on instagram later today and had a good hearty laugh.  No one does that.  Sometimes I tell Josh about her antics, particularly related to holidays, and he is quite shocked.  Let's just say she goes all out.  In a very good way.

I had to hang up to shower (something that also doesn't happen when Josh is out of town). 

I had to shower because the boys had dentist appointments.  James had 3 teeth pulled, and Luke 2 cavities.  This is pure torture.  Not so much for the kids, but for me.  I have a very bad taste in my mouth when it comes to dental work.  I once lived through a root canal that they could not numb (it was infected and I guess that can decrease the effectiveness of the lidocain).  I was never the same after that.  Fear of pain entered into my life. 

We are listening to a Jeeves and Wooster book on CD on our car rides (the Lintons broke down and got a library card).  LOL.  My kids don't quite appreciate British humor yet, so it was just me in the front seat laughing.  I glanced back to see if anyone else thought it was hilarious.  But no.  Just me.

We got to meet Grandma Vicki's new chickens (a dog got into the chicken coop earlier this year and that was the end of most of her chickens).  The weather had us all smiling.

We came home to practice piano, but it proved almost impossible (James did play a bit) in the magical hour of sunset.  James and Sam worked on their long-boards.  Luke and I played catch until it was dark.

 May is almost too much.

thanks for asking

I am doing well.  People keep asking how I'm doing, and I forget that I kind of leave things hanging on the blog.

My left arm with the blood clot is much improved.  It's not exactly back to normal, but I'm pleased.

The surgeons in the tumor board meeting unanimously said to leave the remaining tumors alone if they aren't growing, as the surgery would most likely result in the loss of the entire kidney.  I am okay with this.  I wanted the surgery now because I worried that if we waited, we would have to take the entire kidney.  But it looks like that could be the case with surgery now.  We can't radiate there again, as the doctor thought we had most likely given the max dose of radiation to that area.

Of course I am still hoping that the tumors will just chill and stay where they are, but in my experience with my cancer, if it isn't shrinking it will eventually grow.

I feel strangely prepared for whatever at this point.  I have already been through the emotions of re-occurrence, and the disappointment of drug failure.  Not to mention the cancer being almost as bad as it can get (brain tumors).  So what can't I handle at this point?

This Sunday I taught Relief Society in my new ward (lots of Mormon lingo here-sorry) for the first time.  We were talking about procrastinating repentance.  I told a little bit of my story.  I told them I had 25 deadly brain tumors, and how the cancer could have taken me in months.  I explained that it was still hard to repent, or change, even though I knew when I would probably meet my Maker (I'm still working on some things, which is probably why I'm still here.  The moral of the story was that change takes time).   Well, I kind of left that I'm not dying anymore.  I forgot to tell them the part where all the brain tumors disappeared.

I have been worried since that someone is worried about me.  But that is just too much worrying.  Rest assured, friends, that life for me is so very good.

Today I got to register for 8th grade with James (middle school halls-YIKES).  And it was 'Eat Lunch With Your Kids' day at the grade school.  Luke shoved all his food in his face to get to recess ASAP.  He left me with a one of his huge hugs a favorite saying, "I love you Mom.  You're the best."  Sam took his time.  He sat and looked me in the eyes and chatted about his funny day at school.  He waited politely till I told him he better run out and get some exercise.  "Thanks for coming Mom!"

This is what I fought for.  This is exactly what I wanted out of life.  Every day I am fulfilled.

"Mom, are we millionaires?"  Oh, Sam.  Practically. 

  

stable disease

The tumors have not grown.  Nothing in the brain, nothing new in the body.  The only disappointment my doctor has is that they didn't separate from the kidney to make taking it out surgically an easy decision (those tumors did not shrink).  At this point it would require a partial nephrectemy.  Do we do that now, or wait for three months and see if things improve?  If we wait will we end having to take out more of the kidney to get rid of the disease?

Doctor is leaning toward waiting.  He will talk to the surgeons and get back to me. 

Stable disease is awesome, by the way.  A great big sigh of relief. 

seasonal affective disorder

This week (Wed. afternoon) we will find out scan results.  I expect that we will see continued shrinkage and won't have to do any more treatments right now.  I seriously hope so, this break has been so nice.

I can see changes in myself that are very encouraging.  I have tackled a few projects around the house.   I am no longer wearing a sweatshirt every day of the week.  I have started reading books again.  We even went on an overnight family vacation, which I don't think we have done since school started. 

Truly, I have not been super fun or motivated this year.  I felt pretty happy (except when I was super sick).  Still.  I have wondered if perhaps I was depressed.  Climbing back in bed after I got the kids off the school was becoming a habit tradition.  I really had a hard time finding things that sounded fun to do.  I felt very uninspired.  Then I realized it was February and laughed it off as much as I could, and stayed in bed if I wanted to.  This is just what February does to me.  Cancer aside, it would likely be the same kind of thing. 

It all seems to be improving.  There are signs of Spring (that beautiful Thing!) all around the valley.  Wouldn't good news this week just fit right in?

follow up

One more medical update and then I can break from that sort of information until scans in March.

The results of the last scan resulted in a sigh of relief, but hardly a celebration.  Instead of shouting it from the rooftops (which is probably what it deserved) I felt like crawling in bed and taking a 3 day nap.  The worry had worn me out.

I am very pleased with the shrinking tumor, of course.  I have tons of confidence in IPI.  My worry now that I won't get the full benefits from IPI because of the medication they had to give me to stop the colitis (Remicade).  It takes down your immune system very effectively.  When I work it out in my mind it seems like it will undo what the IPI is trying to do.  Because we don't have studies on this subject, there really isn't an answer.  My doctor believes I had enough of an anti-tumor response before I had the Remicade to fight off the cancer.  But we just don't know how it will all play out. 

When I try and research it, this is about all I can find,  "Infliximab is another option for the treatment of steroid-resistant ipilimumab-induced colitis but its use in metastatic melanoma raises questions of its possible impact on the evolution of cancer." (http://www.ncbi.nlm.nih.gov/pubmed/23458760)

I read of people remaining cancer free after Remicade (Infliximab), and others dying of the cancer after.  I just wish I knew how much of an impact the drug has on tumor response.  I would like to know how much to worry about this.

My blood clot arm has much improved.  It is still a little swollen by the end of the day.  I just got some matching compression sleeves for my two arms so I can start working out.  I am a very special looking person right now.

The blood clot stays put and your amazing body creates other paths for your blood to get back to the heart.  Amazing.

Check out the new blood vessels I'm growing.  I swear you could start an IV in my shoulder right now.

I give myself blood thinning shots twice a day for another couple of weeks.  I don't mind sticking myself, as I truly just believe I deserve it.   But it does leave little bruises all over the belly.

The belly that is kind of large from steroids.  Today I get to decrease my dose again and stop taking them altogether in 2 weeks (as long as the diarrhea and nausea stay away-and they have!).  Steroids put fat on you in strange places.  Like by your collar bone and on your back.  And the belly.  I just do not look like myself.

One fun change is a few streaks of pure white hair I found in my head.

We tried to dye them, but it really didn't make much of a difference.  I figure after Frozen, this is going to be an acceptable style for a while. 

I have three of these spots.  I went to get my hair cut because it is falling out like crazy after the medication.  My stylist said this is not a normal way to go grey and I got really excited.  Could it possibly be the IPI?  Some lucky responders lose all the pigment in their hair as the immune system finds specifically the melanocytes to destroy.  It's a good sign.  I'm not sure that is what is happening here (usually it starts in the eyebrows, and mine are as dark as ever), but either way it's fun to dream of getting old.  I do not feel like I will be complaining about wrinkles and grey hair. 

Things look so much better than they did month ago, I am so grateful!  Thank you for all your prayers and support!!