Saturday, January 30, 2010

This might be normal but I don't like it.

I don't know what to do about Marc.  I just struggle so much with him and as he gets older I know less and less how to help him.  I don't know if he is just a normal 8-year old boy or if there is really a problem.  He doesn't listen at all.  He has an excuse ready at all times.  He is impatient and his anger gets out of control to the point where I keep Rachael away from him at times.  It's not that I think he will inflict real harm on her, it's just that he might throw something in anger or just be too rough.  His anger is fierce and irrational and quick.

He tells us all the time that he no one loves him and everyone is against him.  Honestly, it feels manipulative.  I'm just having a harder time caring that his feelings might be hurt and just wanting him to to take a little responsibility for his actions, listen more often and calm down.

Tonight the stress of it spilled into my evening with Tom and it spurred an argument at first which is incredibly rare for us, and then a heartfelt talk.  And I cried and cried and couldn't stop the stupid crying, also rare, and as a matter of fact I'm still sitting here crying two hours after he has gone to bed.

And I can't even tell you why and no mother, I am not about to get my period.

Sigh.  There are some things I guess I can't really blog about.  There are peaks and valleys in a marriage and I guess we're going through a valley.  I expect it to get better it's just for the first time, I don't know what it's going to take.

Have you ever gone through a valley without a map?  How did you navigate out?

Friday, January 29, 2010


Please pray for this family.  Their baby girl is in her last days...

Tuesday, January 26, 2010

Take THAT Angel of Darkness!

Saying "R.I.P Cancer Journey" is going to be somewhat like Bush saying "Mission Accomplished!"

Fridays are "shot days" and are now officially Rachael's least favorite day.  She told me last week, "I wish every day was Monday!"  Yeah.  Me too!  Except not.

Giving the shot is getting a little easier for me but they hurt like the dickens for her.  The needle going in doesn't hurt so much, it's pushing the medication in that stings pretty bad.  We numb the area ahead of time for about two hours and I give her Motrin an hour beforehand but it's still this weekly looming Awful Thing that just continues to remind her that she had cancer.

And then this weekend she spiked a 103.5 temperature that went down with lots of medication but didn't return to normal for two days.  Oh, and there was puking.  These are just side affects from interferon.  Sunday when she was still feeling pretty lousy she was saying again how it's not fair that she is always the one to get hurt and get shots and fall down and get cancer.  What can I say to that?  "You're right.  It is totally not fair."  I remind her of God's goodness and that He certainly will use this in her life.  She said, "I wish He gave it to someone else!"  I asked her, "Rachael, who would you give it to?"  This thought had never occurred to her.  She just stared at me and then miserably said, "Nobody."

She is so precious.

But then she suddenly brightened and said, "I know who I would give it to!"  I braced myself expecting to hear about a bully in school or, you know, her brother, but she looks at me with this radiant smile and says, "I would give it to Satan!"

Me too baby.

Sunday, January 24, 2010

It's a self-induced problem but I'm going to whine about it anyway.

There was a really wonderfully magical time between returning from Houston and before I returned to work where I got to be a stay-at-home mom again.  I was pretty shocked to discover that not only did I love it but I really, really miss it and wow!  I'm actually pretty good at it.  My house was spotless folks.  I mean, ceiling fans clean, light fixtures washed, laundry room mopped clean.  It was exhilarating in a way that could only suggest I must be getting old or am developing a latent case of OCD.  But my kids were better behaved, I was enjoying them more.  I just started to feel in control of my household duties for the first time in over two years.

So it was with no small amount of dread that I had to go back to work.  And you know, I like my job and I like the people I work with.  It's just that I don't want to be in the position I am today.  Today I am sitting in a house that needs cleaning in a bad way because we are having Bible study here tonight.  I could have come home each day from my job and spent more time cleaning (because I spent some time everyday) and I could have worked for a couple more hours than I did yesterday but I didn't do those things and now today I must pay the piper, suck it up and clean.

Yesterday Rachael ran a high fever all day long and today the fever is gone but she's puking.  It's interferon, I'm quite certain but if was a SAHM again I would be focusing solely on laying on the couch with her and reading books or watching mindless t.v. because all of the house stuff would be done.

I fully get that I am a little lazy.  Other women don't spend time on their computer or watch t.v. or movies at night.  They cannot relax when the carpets need to be vacuumed.  For me, the messier it is, the more I shut down and when I can hold it together I get way more energy.  I'm not proud of the fact that I don't juggle working and maintaining a clean, well-oiled house well.

Alright.  Enough procrastinating.  I'm going to put on some loud music and get to work.

Wednesday, January 20, 2010

Empathy hurts.

This post has nothing to do with my family.  Nothing to do with Rachael or even remotely related to cancer.  My heart is so very heavy tonight.  I want God to be near.  I want answers to problems that do not have clear questions.  I want things to be right and I have no power.

I am longing for peace and for the right words to say and for broken hearts to mend.

There WILL be a day with no more pain.

That day is not today.

Sunday, January 17, 2010

R.I.P. Cancer Journey. You sucked a lot and we won't miss you.

One nice thing about posting every day or so is I don't have to remember what I've done since posting last.  A lot has gone on in the past two weeks and so it is becoming increasingly hard to update in one nice tidy post.  I've been thinking about this blog and why it was started... to chronicle our journey through cancer.  I'm not sure exactly what direction I want to take this journal in right now but I do know it will have to shift.

A little over a week ago I went back to Houston to see Rachael's oncologist and we had a very interesting conversation.  Those of you who know me know that I am not a worrier.  I'm not sure if he expects me to worry but he certainly gives me enough information to give me something to worry about.  He said that one thing research has not been able to determine, because the pool is so small, is if children who get melanoma are more likely to develop other forms of cancer.  If they are predisposed, if you will.  Because she will need to have at the very least lung scans every year or so, radiation exposure is a consideration.  Will this increase her risk?  We don't know.  He said that the possibility of her having a re-occurrence of her original melanoma - the most likely place of re-occurrence would be lung mets (or metastases) is very low but the odds of her body making another melanoma is another matter.  He didn't say it would happen but what he did say is, "Her body learned how to make a melanoma at five years old without the help of the sun.  Even with the best protection she will be exposed to the sun so the likelihood of her developing another one sometime within the next 100 years is pretty high."  But he went on to say that as a "cancer survivor" she will learn exactly what she needs to look for and with regular check-ups even if/when she does develop another melanoma it should be caught early and the good news is early detection makes the odds of survival excellent.

Now, I suppose that is a lot to worry about but what I latched onto was his words "cancer survivor".  Isn't that just the coolest phrase!  My little Rachael is a cancer survivor!  So let me take this moment to thank you all for your prayers and support and let's just rejoice in that.

We have 43 more shots of interferon to go.  43 more weeks of treatment and then her active treatment phase will be over and we will be on maintenance.  Hopefully for the rest of her life she will remain NED - No Evidence of Disease.

I don't think that means our "journey through pediatric melanoma" is over necessarily.  I mean, we will still continue to travel to Houston monthly for this first year and then every three months for a couple more years and then every six months up until the five year point and then every year after that for the rest of her life.  So this has and will continue to play a role in our lives.  Rachael endured a lot in a short time and still has a bit more to go but it far from defines our lives at this point.

As a quick side note, she counted her beads on her Beads Of Courage necklaces (she has two now) and she has 103 beads!

So that brings me to this blog and the purpose it has served.  I like blogging and want to continue but I think it's time to branch out.  I'd hate to think of myself as a strict "mommy blogger".  I certainly am not into chronicling what I made for dinner.

I think about the title of this blog.  "I Love You More".  It came from a game I play with the kids where we try to outlove each other.  "I love you more."  "No, I love YOU more!"  "Well, I love you more than infinity!"  "I love you as much as you love me plus one!"  It goes on and on.

The obvious truth is, I DO love them but damn if it's not hard sometimes!  It is so stinking hard to be a parent.  Can I get a witness?  There are days when I really don't think I'm up for it.  There are days when I wish they would just go away.  I'm just being honest here.  I know not everyone feels the way I do.  There are those women who live for their children.  Who mourn them going to school.  Who love to do activities with them and come up with creative messy ways to enjoy them.  They really enjoy play and will turn down offers for babysitters or even just time away with a girlfriend for lunch because they would miss their kids.  They focus on "soaking up each moment" because the time goes fast.

I'm not that mother.

I do play with my kids and bake with them and make messes with them.  I read to them and plan fun activities for them.  But I do those things because I love them and I want to do the right thing.  Not because I take immense pleasure in it all.

Many people have told me that my blog is "real".  I guess that is what I intend to continue.  You are going to hear about how incredibly difficult it is to parent an eight-year old male whom I Do. Not. Get.  You are going to hear about how our precious Rachael is LAZY.  Yes.  You heard me.  Lazy.  "But she has been through a lot!"  Yeah.  She has.  SO YOU THINK SHE COULD HANDLE PICKING UP HER SHOES WITHOUT A MELTDOWN!

You might hear about my husband's ongoing battle with narcolepsy.  Not really.  We just like to kid him.  Problem is we (and by we I mean me and my friends) are not sure he thinks it's funny.  I suppose we'll find out when he reads this.  (Hi Honey!)

You will hear about how I need to lose weight and exercise and how I really REALLY don't want to do anything I need to do to achieve those goals.  Hmmm... wonder if Rach got her laziness from me?

So, I'm going to change the banner and the picture on the blog soon and hopefully it will continue to be interesting.  It's life.  It's messy.  It's hard.

But I love my little family more.

Sunday, January 3, 2010

I'm not even good at the "bedside manners" part.

I wouldn't go so far as to say I have prided myself on being a really big baby when it comes to medical stuff but it's certainly not something that has made me feel shame.  I think I came by my squeamishness honestly, having grown up in a home with a mother who worked in a nursing home for years.  There were many nights we were all sitting down for dinner and she would cheerfully ask, "Does anyone want to know what happened to me at work today?"  That was met with a resounding "NO!" from me and my dad but inevitably my brother would want to know and then she would tell us anyway.

"I had to do this thing with Mr. Johnson and then there was ooze and puss and so I stopped but it was too late because it had built up and so I had to lance it and then it exploded and shot across the room and stuck there all while he was giggling and telling me what a cute nurse I am."

You try finishing your spaghetti after that.

When I decided to join the Air Force I was given this big book of jobs to look through and possibly choose.  It listed every single job they have to offer and you would think it would have taken me a long time to get through this book, except I got to eliminate about half of the book when I skipped anything remotely related to the medical field.

When I became a mother, I was forced to attend to scraped knees on occasion but I am not kidding when I say that I got a bit woozy more than once.  Even reading the Twilight books were good for a couple skipped meals due to complete loss of appetite.  Once, one of my coworkers told me about a particularly gory infection he got and I came VERY CLOSE to vomiting right in front of him.  The visual actually stayed with me for several days and whenever I would think about it, I would dry heave just a little.

So you can imagine my glee when I found out that I have to give Rachael a shot once a week.

I've never even watched myself get a shot.  I always look away and just breathe deep so I don't pass out.  And forget seeing a needle go into my kids.  I've put on a brave face for them but I could never watch.  But, in preparation I had been forcing myself to watch every needle stick Rachael has gotten.  I went to the little demonstration to learn how to do it and got to stick a fake blob of fat (because that is JUST LIKE my kid with about -4% body fat) and went home with full confidence that I could do it!  Or at least with full confidence that I could drive two hours away where my mother lives and let HER do it.

I numbed up her leg with the cream and got all the stuff ready, which is not terribly difficult but just complicated enough to make me feel like I know what I'm doing.  Rachael is lying on the bed and I've got the needle all ready and she starts crying and I'm considering crying but I take a deep breath and go in.  And I get right there next to her thigh and totally chicken out.  I have to back up and I'm trying really hard to not completely freak out and Tom is not happy with me and I'm very intentionally NOT hyperventilating and she says, "I'm scared Mommy!"  And I just had to laugh.  And I laughed and laughed and she's crying and I yell, "I'M SCARED TOO!!"

And then I did it.

And it was over and we gave her candy and I had a drink and later when she was telling Marc about it, Grandma overheard her say, "It didn't hurt.  I just like to cry so they'll give me candy."

And you know what?  That's okay.