What I'm thinking about when I can't sleep

3:30 am and another night when I can't sleep.  What am I thinking about?  The same thing that's kept me up on other nights - softball.
It's hard to write about this.  Lots of mixed emotions.

I am incredibly grateful that Meg has a team that has stuck with her, and that she has an opportunity to play at all.  Her coach - the one who has been her coach for many years, has been there in so many ways.  Not every coach out there would have kept her on the team.
But it has been a source of pain and hurt and heartbreak for her.
She feels superfluous.  Written off.  And it hurts like hell.
She's spent the season on the bench. 
I get it, that she isn't "up to speed."  I get it that she isn't a great player, and that the coaches need to look at the team as a whole, and of course, they need to put the needs of their own kids first.  That makes sense.  I can't fault them that.
But it hurts her.  In her heart and in her head, she's an athlete.  She wants to get better, and she wants to feel valuable and needed.  She won't get better sitting on the bench.  She won't ever get stronger, get back to catching, as long as she sits on the bench.  The message was made loud and clear on day one of the season - you aren't a catcher, you're a benchwarmer.  You aren't here because we want you here, and value you as a player - you're here because you had cancer, and we feel sorry for you, and we feel like we can't just drop you.  Of course it is more than that - of course it is a sign of the uncertainty that surrounds her, and a sign of caring that she is, no matter what, a part of the team.

Every time she goes to practice, and gets treated like an incapable sick kid, it drives her nuts.  It's insulting, and hurtful.  And well-meaning. And caring.  It is both a source of love and of hurt.  It is one more way that disease messes with you.

And so when I lie awake at 3:30 and think about softball, it really isn't about softball at all.  As always, it's about the damn cancer, about what it has done, about what it continues to do, and about how I protect my little girl.  I can focus on the "little" things, like softball because they at least feel like I should be able to do SOMETHING.  As for the cancer, and the future, I'm powerless.

So now what?  Doctor says scans are good.  Report shows no worrisome "uptake" on the PET, but a 5 mm node that wasn't noted before.... something to watch.
I hate that there is something to watch - something to worry about.

My heart breaks for all that she has lost.  My heart breaks for the hurt that she continues to feel - when she watches other girls take her spot on the softball team, when her coach tells her she should sleep in and miss the first the game.... when she hears about her classmate's social lives, and knows that she isn't included.  And the little things - like that fact that she cant have a ponytail.

cancer is so cruel.

"normalcy"

Two months off treatment.  Clean scans.   The fact that my daughter has cancer still never leaves my mind.  It is a constant.  After all that's happened, even if this thing never reappears, it will always be with her.  She will live with it, and to a lesser extent, so will I.

This week, I sat and watched my child in the goal - for the first time in 16 months.  I watched her deflect ball after ball.  I felt such joy that she was able to do this again.  And at the same time, grief at all that she has lost.  I'm thrilled that she is out there.  I'm in awe of her.  Where would she be right now if she hadn't gotten sick?  How would she be playing?  Would she be prepping for upcoming tournaments?  Anticipating college recruiters?

Today I try hard to just be happy for all that she has.

Waiting

Waiting today, for results from Meg's PET scan last week.  With the long weekend, the wait is especially long.  Last week I was filled with anxiety and dread.  Meg was convinced that her nodes in her neck were enlarged, and that she is once again experiencing the swallowing issues that were a symptom before diagnosis.  CT was Thursday - PET friday.  Her doctor called Friday morning while Meg was waiting for the isotope injection.  He said the CT looked "good" - some thymic rebound (very common) and the nodes in her abdomen were "stable."  Huh?  What does that mean - nodes in abdomen stable?  I thought we were good.  I thought that there were no nodes to watch.
So now we wait for the PET results, to see if "stable" means clear, or "stable" means cancer.
On the plus side, no mention of enlarged nodes in her neck.  So maybe we are okay?  For now at least?
Can we dare to plan for the summer?  For next year?  We've been planning for summer - cancer be damned.
Meg is planning out sports teams, lessons, camp, her MAW trip.  It is going to be an amazing summer.  cancer be damned.

Feeling the weight of it all

Most days, I try and focus on the positives.  I'm so thankful to have my child with me, and I take each day as a great gift.  She's come through so much, and she's come so far from where she was.  But today is one of those days when I can't help but feel the enormity of the loss. 
Today was a softball game.  I went late - figured that I wouldn't need to be there early to see her play.  Another game, where Maggie got to sit on the sidelines and watch her teammates.  Another game where she has missed out.  I hate it.  I hate that my amazing, talented, athletic child has to sit on the sidelines.  It isn't fair.  It isn't right.  It just sucks.

I hate cancer

Today I am worried that we will never be free of this.  Meg has had some strange back pain, and her finger is swollen.  Weird things.  could be anything.  could be cancer.  Sheesh, she is only a week off treatment.  A week!  Is this it?  Is this all the "good" time that she gets to be free of cancer and looking forward to a disease-free life?  No matter what it is - I realize that for years ahead, every twinge, every fever, every lump... it will always make me wonder, make me shiver, make my heart leap out of my chest.  How do we do this?  How the hell do we do this?

March

Well, I didn’t do a very good job of keeping up with this, did I?



I was going to figure out how to come up with a cool background and format. I was going to write all the time. Oh well.

It’s March, and we are closing in on the end of treatment. Yes, I have mixed emotions. I see the toll that this has taken on my child, and it makes me so sad. I know that there are so many scars. The physical scars from surgery. The dozens of stretch marks that cover her body – thanks to the prednisone she takes. And all the really big scars. All the deep, deep scars that she carries with her, all the pain she has endured, all the days that she feels like a freak, all the stares, all the cold shoulders, all the pain, all the isolation. How will those scars be visible to those around her? How will she heal?

Today I’m not afraid for the future. Or maybe it’s so huge that it’s buried deep. Back to the cheesy songs – Que sera, sera. I can’t change what will happen, and I can’t live in the dark place where fear lives with what ifs. Yeah, relapse is a very real possibility. But so is continued remission.

I’m tired. Still tired. But the sun is shining today, at least.

Another day

It's January now.  Snowy, cold, January.  I looked back at her caringbridge page the other day - at all the hope, all the energy, all the determination that she had.  Now she is just tired and getting through each day.  She is worn out.  I worry about that.  Does being worn out affect her prognosis?

I'm not so angry anymore.  I think I'm worn out too. 

Now, I'm thankful for every day with her.  Even when she is difficult and cranky and overwhelming. 

About 100 days to go.  As this gets harder and harder, the need to reach that 100 days gets ever more urgent.  She needs her life back.
But I can't deny that as it gets closer, the anxiety and the dread creep in.  Meg has a significant risk of relapse.  They really don't know how to cure cancer - they only know how to kick the shit out of it and hope that your body figures out how to keep it away.
What I didn't realize before - so many cancers happen because of a chromosomal abnormality.  A gene mutation, or translocation.  Just because you kill all the existing cells, it doesn't mean that the problem goes away and that the screwed up gene goes away.
Science hasn't figured out yet how to fix the damn gene. 
The best hope they have for now is to teach your body to attack the messed up cells right away and kill them off.  The body's immune system needs to recognize the cancer cells as enemies as soon as they are created, and learn how to kill them right away.
So they know how to block a receptor on the mutated cells - to slow down or prevent their reproduction.  The hope is that's enough to get the body going.
But genes are smart.  These mutants want to live, and they figure out how to get around the blocker.
We have to do better with this stuff.