Good cop, Bad cop

If you had been in the car with SG and me yesterday, you would have heard the following sentence uttered with great conviction:

“I really think it’s time the girls graduate, move out and get on with their lives.”

Mostly likely you will assume that I am the one who said that. The one who, after 2 too many snow days had begun to lose my mind. To regret the decision not eat our young.

You would be wrong.

It was SG – aka Mr Wonderful. The favored parent. The one who loves all things child related. The one who creates projects at will and treasures every freaking waking second with the fruit of his loins.

HE is the one ready for them to grow up and move out.

I am the one who laughed at his obvious pain when I broke it to him that our youngest is still in elementary school and will be with us for some time yet.

It gives me great pleasure to hear him say things like that and know that sometimes, just sometimes, I am the nice parent!

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It’s like the world exhaled

The quiet is overhelming this morning. When you’re surrounded by feet of snow, every sound is a little more muffled.

The dogs are sleeping, the snow is falling and the chaos of snow days has ended! Sure I still have one kiddo at home – the high school had a planned teacher work day – but she’s blissfully asleep as teenagers are known to be at 9:00am.

I thought that living in the rocky mountain west would eliminate things like “school closure due to extreme weather”. We didn’t have snow days growing up and we were at 5,000 feet elevation. We got seriously dumped on, on a regular basis. This past week’s storm though, was of epic proportion and the snow plows couldn’t keep up. School buses couldn’t get through, cars were stuck everywhere and people were skiing in the streets. Despite the constant shoveling it was pretty cool!

We ended up with two feet of the beautiful white stuff in our yard in a VERY short time. It’s gorgeous!!! Outside.

Inside was a different story. It was a constant stream of snow-covered boots, snowpants, mittens, hats and scarves thrown to the side as they came in the door. Pools of melted snow big enough to swim in took over our laundry room and found its way into the kitchen. Towels handed to them to wipe it up were thrown in the middle and soon became just another building block in our mountain of mess.

But it didn’t matter! A snow fort was built, sleds were dusted off and laughter was the constant background noise. Ok, so was arguing and me saying “please just shut the hell up for a few minutes” and “can you all please go back to school!!” But we survived and today I’ll deal with the mess. With the help of my still sleeping teenager. She’ll be so excited!

There was a moment in it all when SG, D1 and D3 were gone and I was tired and taking a little time to just sit and read.  D2 decided to go outside and when I looked out at her playing in the snow by herself, I thought “what the hell am I doing?”

I got up, put on my snow clothes, grabbed the igloo block makers and joined her. The smile on her face when she saw me almost brought me to tears. We spent the next 2 hours building a fort, falling back into snow banks and just enjoying the mountains of fresh snow everywhere. Together.

Too often I’m worn down and I think I’ll go outside “next time” or I’ll join in “a bit later”. Maybe it was the scan this week that made me think a little more that there might be fewer “next times” ahead. I don’t know what it was but I’m so glad I didn’t stay in and watch. She’s 11 and soon may be more interested in sledding with friends than hanging with me.

The enormous smile on her face was enough to remind me that NOW is when I need to be outside with her. Her genuine happiness when I joined her reminded me that today is what matters. The  joy of playing in feet of fresh snow in the sunshine is exponentially greater than the energy it requires. This is what builds the memories they’ll have long after I’m gone, even if I’m here for another 50 years.

So today while they’re back at school, I’ll put the house back together and watch even more snow fall – yesterday I had much more important things to do and now a bruise on my left butt cheek to prove it. I don’t know who put that damn jump in the middle of the sledding hill!

A good scan and a winter wonderland!

Red Lodge Mountain Resort, looking at the Pali...

Image via Wikipedia

I only have a few minutes to write because my children are all home.

Yes, we have a snow day in Montana!! Who knew that was possible?? I guess when you get 15 inches of snow in 36 hours, it’s hard to keep up with. Did I mention it’s still snowing?

We somehow managed to get to my CT results appt despite cars stuck on every street here today. The plows can’t seem to keep up. It was worth the hassle though because the Nexavar is still working! Could you hear me exhale from there? I hadn’t realized I’ve been holding my breath the last 10 days or so until I finally relaxed and let it out.

Judging from the headache and sore teeth, I’ve also been clenching my jaw.

I’m off to go sledding now so you all enjoy your day!!

I know I will 🙂

Well now that I have that out of my system….

If you haven’t had a chance to read yesterday’s post, it went something like this:

Blah blah blah whine whine cancer blah blah certain death whine whine sedatives.

I don’t recommend scrolling down unless you don’t have any children who can provide your daily whining quota. Then by all means, enjoy!

You’ll be happy to know I’ve bounced back already. Funny how life does that to you. After I hit publish, I looked over and noticed the head on our chickadee cookie jar was on backwards – yes we have a cookie jar shaped like a bird, don’t judge me. Anyway, the head was on backwards. I’m suspecting that was done by a much younger family member so that when I fixed it I’d notice it was empty.

Whatever the reason, it made me laugh. And then I made chocolate chip cookies. You know, the 2 things that really make life worth living.

When my kids came home and came tumbling through the door laughing, I thought fuck this shit! I haven’t fought this stupid thing for 6 years to go crawl in a corner and pout just because someone I’ve never met can no longer take Nexavar or because another person who happened to take the same drug for a while passed away!

I’m too damn tough! And I’m too selfish. SG and I were talking in bed last night and I told him part of the reason I can’t go yet is because I don’t want to have to say goodbye to him or the girls. I don’t know how to do that and I don’t want to have to figure it out.

So what if my scan shows new growth – which it most likely won’t. If it does I’ll deal just like I have before. When Gleevec stopped working my world was rocked. When Sutent and Sprycel didn’t work at all I wasn’t that surprised. I survived 2 major abdominal surgeries in under 8 months and still kept doing most of what I did before. Maybe a little slower for a bit but I did it.

This shit is cake! I’ve got it down.

I’m deleting the list serve emails for a while and I’m going for a walk in the fog.

And if all that fails, I’ve got a chickadee full of chocolate chip cookies!! You know I get in trouble when I go to the oncologist and I’ve lost weight. That would be a shame!!

ps – thanks G for the text last night!

When a little is too much

Sometimes a little  information is power – sometimes a little bit is way too much.

Everyday I get a “digest” type email from a GIST support list serve. I scan it to see if anything is interesting – if there are new clinical trials (just in case) or if someone else on Nexavar has news or questions.

Today I saw a post from a woman who started Nexavar about the same time I did. We’ve shared good scan news over the last 20 or so months. I clicked on it knowing she’d be having a scan soon. She did. The Nexavar is no longer working for her. She has tumor growth and will be changing drugs again.

Despite thinking I was tough after all this time, my already slightly elevated scanxiety skyrocketed.

Then I got to thinking about the other person who started the drug that same month so I did a name search. He passed away a few months ago.

I started frantically cleaning and harping at my family over absolutely nothing. Well not nothing, but nothing I could share with the girls around.

The oldest had left just before that to go sell ads for the school newspaper. SG has since taken the other 2 to run some errands. So here I sit while my brain goes into overdrive.

I know they aren’t me, that our bodies don’t react to drugs in the same way. But they are me. They are going through the same things at the same time, all the while fearing the worst with each scan. One of them has already left loved ones behind.

The other is heading into the great unknown of the next treatment.

With each scan, part of me wishes to be off this brutal drug while the other part is terrified of going off one that works.

The devil you know is better than the one you don’t right?

This may be easier if I had been feeling better the last week or so. I’ve been blaming it on eating stupid holiday foods. That’s the reason it’s uncomfortable sitting very long.

It’s NOT like spring 2010 when the tumor between my stomach and spine made sitting difficult.  Or summer 2009 when the one low in my pelvis combined with the ones under my rib cage caused pressure with every movement.

I’m sure of that in some parts of my mind, while others grab onto the failure of the drug for others and run rampant. 

These are the days I hate. The ones full of doubt. The ones that make me wonder what I need to get done before….

Before another surgery.

Before another drug failure.

Before I just don’t get the chance.

I’m sorry to come back to blogging just in time to panic on you all but I don’t know where else to put all this.

I need sunshine and a walk –  and a clean scan.

And sedatives.

 

Happy New Year my friends!

Sometimes I forget that when you disappear from a blog that is heavy on cancer posts, people might suspect you’re having a health crisis of some kind. Or that maybe it finally got me.

That isn’t the case – thankfully. Or not, depending on your perspective.

Life just somehow got in the way of my writing. 2011 was a heavy topic sort of year and I found that I didn’t want to write about it. Although I have to say, after writing my 5yr cancerversary post, I felt like a huge weight was lifted off and I’ve been able to put much of that experience deep in the back of my mind. It helped so much you’d think I would continue to do it.

I’m a slow learner and checked out instead.

I mentioned along the line all the stuff that was going on with friends and health issues. D2’s friend lost her mom in January. I lost my friend K in August. My daughter’s friend has been fighting leukemia since September and another dear friend and her family lost their husband/father in October. It was all just too much darkness.  I think maybe I didn’t want to see it in print.

Now it seems, there are things I want to share with you.

On a bright note, I made a trip to San Diego mid December to see my nephew graduate from Marine Boot Camp. It was a truly joyous 3 days that showed that no matter the teen struggles, it can all turn around. He is so happy with his decision to become a Marine and the pride just radiated from him. He had a few days leave and went back yesterday. He is a new man and I am so proud to be his aunt and Godmother!!

On a darker note, while we were home for Christmas, my dad had is hip replacement replaced. Does that make sense? Dad got a new hip close to 6 years ago. A year ago he got a call that the artificial joint had been recalled. Is that not the stupidest thing you’ve ever heard? The socket and ball were both metal and it turned out that was a bad concept.

The two metal parts were rubbing together and it was putting toxic metal shavings into his blood stream and destroying the surrounding tissue. Do they not think of these things before they approve them??? Who the hell is in charge of that?

After some struggles getting the company to pay for testing, they hired a lawyer (a trustworthy family friend who happens to be a killer in the courtroom) and things started moving along. A year later, he got the revision! He is such a strong man with such a high tolerance for pain that it broke my heart to see him after surgery looking a little more frail. This company needs to pay dearly!!

On the other side of the family, I received a call from my MIL 6 days before Christmas asking me if my cards were out yet. She felt the need to remind me exactly how many days were left until Christmas and which of her friends should get their ANNUAL card.

When I replied that I was well aware of how many days were left and that I’d been busy with my trip to CA and 3 kids, she told me she’d better “let me go”. It was probably for the best. It’s been 18 years and the previous 17 she reminded SG to get cards out, I suspect on the 19th Christmas she’ll go back to that. I enjoyed it 🙂

Oh yeah, January 16th is my next CT scan. I want to thank all of you for talking me through the last several. I still find myself torn between wanting to be tumor free and wanting to stop taking this damn Nexavar. The love/hate relationship continues.

I don’t know what 2012 will bring but I promise I’ll be better about keeping up with posts.

I wish all of you the very best in the new year. May it be one of peace, prosperity and of course, good health!