Friday, January 9, 2015

3 years post treatment

Getting scans near your birthday is a bit risky, but I scheduled Steven's for today without thinking.  Thankfully, they looked good, and we are thrilled.  Each one he passes, I just feel a bit more secure that the cancer is gone for good.  It's true and it's not true--I watched cancer sneak up on my little sister just when she was done with scans and done with worry.   But still, even if we are biding time, at the very least we have six more glorious months without cancer fear.

That is, cancer fear for Steven.  All week I've been a nervous wreck.  Alisa had scans also this week and learned that her cancer is growing despite the treatment she has been taking.  It is a devastating blow and the combination of scanxiety for both of them and bad news for her has been rough.  But nothing compared to what she is going through.

Yikes.  Cancer, I hate it.  For me it inspires fear like almost nothing else can.  And sometimes the fear is crippling. I think it is part of my challenge to go forward and overcome this fear and go forward with faith that things will somehow work out.  That is a whole lot easier to write than to do.

Sunday, January 4, 2015

Goodbye 2014

Christmas and the start of a new year always leave me reflecting on the old year.  I wonder if we really progressed.  Did we meet any goals?  Are we better off now than a year ago?   I haven't been updating to this blog much and so I decided to share some thoughts and things from the past year here.

We started off this year with a mini disaster.  It was our first Sunday with 9am church.  I was teaching that day and was distracted.  I put a pot of dry beans on the stove to pre-boil and soak them.  I never turned it off and went to church for three hours.  Longer, actually, because Steven had an interview with our bishop to get the Aaronic priesthood.  We came home to a house full of smoke.  Luckily, there was no fire, but he smoke damage gave us a run for our money.  It was months until the smell finally left (if it even has).  Overwhelming!

After devoting weekends to smoke remedy, I begged Rob to redo our basement bathroom.  He obliged and spent 4 months of Saturdays on the project.  Here are some before and after pictures.  It wasn't functional as a shower before the project, and we only had one bathtub/shower.  This one is in the basement.  I'm sure someday someone will wonder at the handicap accessibility in a basement bathroom, but it has been really nice for Steven, who sleeps in the basement.  It's made a huge difference and Rob learned a lot in the process (mainly that he should say no when I ask [tell] him to do a project and also not to buy an old house).

The rest of the year is harder to put my finger on.   So many good things happened, but hard things too.  To name a few, Steven got braces, my youngest brother got married, my youngest sister got home from her mission in Spain, Steven started Jr. high, Laura started first grade, I started my first year as a stay-at-home mom without any kids during the day.  Addie turned eight and was baptized.

One hard thing that has happened and is happening is that my sister, Alisa, has had her cancer come back and tried an out of state treatment and had relapses and all kinds of cancer problems and miracles.   But she is hanging in there and teaches me every day about moving forward despite trials (and because of trials.)  And I am learning all over again about hope.  

Among the noteworthy things, there have been lots of the normal stuff to fill up all the time in between:  homework, appointments, practices, school, scouts,  the occasional sibling fight, projects, yard work, dog walks, work, grocery shopping, meals, and the ever present house work.  Sometimes it's hard to find importance in these things that seem kind of tedious, but together they make up the year, and this year will be filled with stuff like that and together they will form our lives.  

And in the meantime, we are growing up too fast.  This year I want to work harder on enjoying the everyday and making more memorable moments.  The older my kids get, the more I realize just how good I had it when they were small.  And that makes me  think that someday I'll think I had it so good!  Why didn't I enjoy it more?  So here's to 2015 and joy!  I hope it for all us, I really do.

Sunday, November 23, 2014

A favorite Bible verse

My Aunt Kathy is kind of a marvel.  One of her many talents is that she always seems to know just what to say to lift you up.

A while back, she pointed me to a scripture that I hadn't noticed before.  Job 23:8-10, 17:

8 Behold, I go forward, but he is not there; and backward, but I cannot perceive him:
9 On the left hand, where he doth work, but I cannot behold him:he hideth himself on the right hand, that I cannot see him:
10 But he knoweth the way that I take: when he hath tried me,I shall come forth as gold.
17 Because I was not cut off before the darkness, neither hath he covered the darkness from my face.

I read chapter 23 in Job over and over a few months after I lost Daniel.  I know that I cannot compare myself to Job--for one, my trials are few compared to his, nor is my character so good as his.  But still, I found quite a bit of comfort in the book.

Six months or so following his death, I found myself kind of spiritually dead.  Right after he died, I was buoyed up by the spirit and strengthened so much from the comforter.  But as life went along, it was getting harder for me to take care of my family and I felt alone. (As a sidenote, at this point I went and saw a grief counselor.  She told me that people have the hardest time in the stage of grief that takes place between about 2-8 months after a loss.)

Verse 8 seemed to fit--I did try, but I felt like I couldn't find God, that I just didn't have the strength to look.  But then verse 10 is what I tried to focus on:  "He knoweth the way that I take."  That was it--maybe He was hard for me to find in my state of mind, but He knew where I was.   I took hold of that thought and it has pulled me through a very dark time.

It was later that I noticed verse 17.   In the previous verses he talks about being refined as gold and having his heart softened.  And he has those things because he had to go through that darkness--the Lord did not hide it from him.

I've got a long ways until I "come forth as gold."   I still wish that the darkness could be "hidden."  I wish I were better at seeing the hand of God.  But still, I trust that He is there for me.   Never far from my mind is the thought, "He knoweth the way that I take."  And I know that I am not a special exception--He loves all of us and knows our hearts.

Sunday, August 17, 2014

A few pictures from this summer

At the aquarium--a shot of the back of his leg

The bridge at the aquarium again

At Lake Mary

Bear Lake

Sunday, June 29, 2014

Good scans

Sometimes I wonder if I should even update the blog with news of good scans.  You know I would if they were bad, right?  I often think about when Steven was first diagnosed with cancer.  I searched the internet for everything I could find about osteosarcoma, including blogs.  The only blogs I found were about kids who had lost their battle.  It was unnerving.  I promised myself that I would keep blogging, especially if Steven did well and survived.

It is hard to keep up a blog, and in the years since he finished treatment, I have gotten less and less faithful.  I've said before that in some ways, I just want to move on.   But I think about people searching the web, looking for hope after a recent diagnosis and that is why I keep it going, even if it is sporadic.

Having said that, Steven's scans looked good this week.  This was the first 6 month interval and it has been so nice to not have to worry so often.  This week Steven and Rob went to youth conference  and went river rafting.  They had a blast.  He came home oblivious that he had scans.  I also had a busy week and didn't think about them much.  Even the night before, I still hadn't been hit with that all too familiar scanxiety that I normally have.  I started to worry--what if something bad happens and I haven't been worried about it?  (Crazy, I know!)  But no matter how hard I tried to worry, I just couldn't.  Even the morning of, I ate a full breakfast and we headed over to the hospital.

I'm so glad they were good, and I feel like God spared me some worry this time.  We've had our share of worries about Alisa, whose cancer is slowly spreading.  She is facing some hard choices about treatment now.  We continue to hope and pray for her--she is a living miracle and I have a feeling that more miracles are around the corner for her.

Monday, June 23, 2014

Steven rides again

On Saturday, Steven, Andrew and I participated in the Huntsman 140, a bike ride to fund raise for the Huntsman Center.   We tagged along with my sister, Alisa, and her husband's awesome parents who have given so passionately to this cause.    Alisa's father-in-law has been riding with a handful of people from Reno, Nevada, to the Huntsman center in Salt Lake--over 660 miles.  His dedication made me feel like a bit of a poser.  We did the final mile of the ride.  Yes, only a mile!  In fact, we were the only people who did only a mile--the other 700 riders did at least 25, 50, 75, 140  and even 660 miles.   But even so, this was  a big thing for us, and here is why.

You must know that Steven has been riding bikes from a very young age.  He practically taught himself.  Our first home had a large unfinished basement and he rode bikes down there whenever he could.   Enter cancer--no more biking.  He had to lie low before his surgery to avoid breaking the bones (not to mention he felt terrible.)  Then the surgery changed everything and even once he was up and walking, riding a bike felt really difficult because he didn't have the range of motion in his new "knee" like he did in a real one.

We were told he would be able to ride a bike, but for all we tried, it felt really hard.  He isn't much of a quitter normally, but every time we tried the bike thing, he gave up in frustration.   Some friends we met through this cancer experience were kind enough to give us the right side of a crank shorter for a bike pedal (Garrison lost his left knee).   But we've had that for a few years and have put it on several bikes, still with no luck.

Last year at the Huntsman 140, I determined to do all I could to get Steven riding to be able to participate this year.   But the year went on, he lacked motivation, and I think I was just worried that he wouldn't be able to do it.  Somehow it seemed easier to live with the hope that he could than the knowledge that he couldn't.  So I didn't try.  (I know--awesome faith here :)).  This spring, I was looking at my Facebook feed one day and I saw that Tim was up on his bike.  (Tim is Steven's surgery "twin"--they had the same doctor and surgery within a week of each other.)   I started to hope that it was possible.   

I had already talked to Steven's prosthetist and therapist at Shriners, and both had been really supportive of getting Steven riding.  I had an appointment at Shriners set up and I decided to get a bike for Steven before then so I could bring it to the appointment and have them help us figure it all out.  We went out shopping for the bike.  Andrew was as excited as Steven.  I had never bought either of them a new bike.  I didn't buy one  for Drew yet because I was worried that Steven wouldn't be able to ride and I'd have an extra bike sitting around.  So we took it home and Andrew rode it around and Steven looked on longingly.   The next day I took it and all the parts I had to Shriners.  And then I left it there for them to modify.

A few weeks later at our next appointment, both Eric and Sonya, his prosthetist and therapist, helped get the bike adjusted and taught him how to use the gears and held up the bike to help him balance.  They added a pedal with a strap to keep his foot in.   After that, it didn't take long at all until he was off.  I couldn't help crying out of gratitude for all the help we'd had and out of joy that he would get to ride a bike.  And even better was his sheer excitement that he could ride a bike and that he had overcome this seemingly impossible thing.  

And that is why only one mile still seems like a very important mile to me.  He had only been riding for two weeks and yet he was up ahead of me the whole time (okay, that wasn't too hard to do), but still, he led the way.  And next year he will ride longer, I'm sure of that.  Now Andrew has a new bike, too, and seeing the two of them ride around the neighborhood is such a happy sight for me.  

Rich Linton in his Reno Riders jersey, Steven and Alisa in their survivor jersys--the rest of us in back.  

Tuesday, February 18, 2014

Three years ago today. . .

We were headed to California.  Steven had just had a biopsy of his leg and a confirmed diagnosis of osteosarcoma.  I had never felt such acute anxiety.  I practically hadn't slept or eaten in two days.

What a difference the years have made.  It is weird to look back at that experience and feel like a bit of an outsider, when it shaped us so much into who we are today.  I feel like I have forgotten so much, maybe on purpose.

Today I found out that my cousin's boy has leukemia.  I can't get him out of my mind.  When I told Steven, his face went white, he was horrified.   I may have mentioned that just as school was starting, a boy at Steven's school, in his grade, was diagnosed with osteosarcoma.  These instances are hitting too close to home, and while I should be some sort of big help, I feel like my hands are tied by the very thing that should make me the most helpful.

It's weird.  There is a reason I don't write much anymore--it's partly because I want to forget about cancer.  But even when I try, it is right there--hurting other people.  Still hurting me, really, because I still worry about it.  Sure, we live on and we don't talk about it much.  We hope and dream all the time about our futures, but for me there is always a dread in the back of my mind that it will come back.

I remember reading books in the hospital about parents of cancer patients.  One thing said that people move on from cancer in different ways--some become activists, others use their knowledge to support other families--I've seen these types of parents, it's amazing to me.  Maybe it is so amazing because somehow I've become the parent who slipped into the shadow and tries to forget about cancer.  I didn't mean to be that way, but I guess after I lost my baby, I just didn't have much in me left to give.  I still don't.

For years I've wanted to write a post about how to help people when they have cancer or some other big deal thing.  When the boy at Steven's school got diagnosed, I was determined to do it.  Now that my little cousin has cancer, I'm once again resolved.  Tonight I don't have it in me to go into detail, but I will say this--just do something.  Each action we take is a way to show love and support, and even if the person doesn't acknowledge your words or deed with a thank you note, it won't go unnoticed.   I could not have endured the past three years without the love and support of those around me.