Diagnosis week 2012

Diagnosis Week should in no way be confused with Spring Break Week 2012.

There will be no topless pics because well, ewww! There will be no Annie Gone Wild videos because quite frankly I lack the energy and again, ewww!

This week perfectly lines up with Diagnosis Week 2006 – Valentine’s Day was a Tuesday, my tumor blew up on Thursday the 16th, I was told I had metastatic cancer on Sunday the 19th and well, you get the picture.

So this one is messing with my head a little. I skipped the elementary school Valentine’s Party because I just didn’t feel like flashing back to running out of energy mid party and having to sit down like 6 yrs ago. I’ve tried to change things up a bit.

Last night, instead of sitting on the couch with a heating pad on my stomach, I played Bunco and drank wine. It was an improvement.

This morning, the dreaded body part exploding Thursday, instead of laying on the floor in the hallway in pain, I ran some errands. I bought a coffee and watched Survivor. Hey, I watched “Survivor” – get it? I just realized how appropriate that was. I’m witty even when I don’t know it.

Tomorrow, since I have no recollection AT ALL of what I did on the Friday 6 years ago except stay in bed and be moderately dead, I think I’ll go for a long long long walk. Because I can.

Saturday night, instead of going to the ER and having surgery, I think I’ll hang out at home. Again, because I can.

The rest of the weekend I think I’ll wing it. My parents are talking about coming over Monday to see the girls since they have President’s Day off. I’m sure that’ll be an improvement from when they came over on the 19th 6 yrs ago. I was in the ICU and they picked up the girls from their night at the neighbor’s while I was in surgery. Last time they had tears and a dying daughter.  This time I’m thinking frozen yogurt and TJ Maxx.

Life tends to come full circle and this week I get my do-over. No exploding body parts, no 50/30 blood pressure and no surgeries. Yes, I will probably feel crappy from the Nexavar but maybe that’ll remind how far I’ve come. If I start to forget, I’ll go back and read my post from this time last year. That one always brings it home for me.

Who knows, maybe there will be a little Cancer Patients Gone Wild – but there won’t be videos.

Six years and counting. It feels good.

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She’s so much smarter than I ever was….or will be.

Yesterday I was driving D1 home from school and she started telling me about Valentine’s Day – the high school version:

Mom, you wouldn’t believe it at school right now, it’s crazy!

Why? What’s going on?

Every single club, and I mean EVERY. SINGLE. ONE, is trying to make money off the whole Valentine’s Day scam thing!

Scam thing??

Yeah, every corner you turn has some table set up trying to sell chocolates or flowers. They’re even offering lunch-for-two in the cafeteria. They actually wait on you and of course you have to do it because if you don’t and somebody else does it’s going to make you look bad. It’s like they’re all competing for your Valentine guilt money!

You’re pretty smart, you know that?

I got it from Dad.

Of course you did.

M and I have to go around and get signatures for Amnesty International. If they sign the petition, they get a free chocolate. Even that’s pretty sneaky don’t you think?

It kind of is. So, did you send anything to anybody?

Yeah, the Latin club had these amazing chocolates. They were 8 for $2. They’ll be delivered to ME second period? I wanted some so why should I wait for somebody else to do it?

Like I said my friends – sooo much smarter than me! Happy Valentine’s Day!

A Community of Strength

When I was first diagnosed with cancer, I had no idea where that fit into the rest of my life. I was still a wife, mother, daughter and friend but now I was also a cancer patient. One of these things is not like the others. One of these things just doesn’t belong.

After psycho nurse asked me how I “felt about having young children and cancer”, it got even worse. I didn’t know what that meant for me, or my husband and daughters. I didn’t know what that meant for my future or if there would be one.

I just didn’t know.

I looked for a support group locally for other “mothers with cancer”. I contacted the American Cancer Society and was told there were many breast cancer groups and there would be moms in there. Only problem, I don’t have breast cancer. There were also “look good feel good” groups for women going through chemo. There would be moms there.

But again, I wasn’t going through regular chemo. I was on a targeted therapy, a daily pill forever, and  I wouldn’t be losing my hair (until now).

The one thing that didn’t belong was me.

I searched online. I googled “moms with cancer” in every form I could think of. I found support groups for kids whose moms have cancer. I found more breast cancer support groups. I found parenting through chemo websites. Again, none that fit my situation. So I tried to figure it out on my own. I wasn’t all that successful.

I joked with friends that I wanted to start a cancermom.com website but I never did. I was diagnosed in 2006. In 2008, Mothers with Cancer was started but I didn’t notice.

I didn’t notice until Marinka suggested I join twitter. I put the word cancer in my little bio thing and I started getting followers. Fellow women with cancer who didn’t care what kind I had. Most of them have some form of breast cancer – the cancer I secretly wanted if I had to have one, simply because of the sense of community they seemed to have. I know that’s a ridiculous thing to say, but when cancer enters your life, rational thoughts take a flying leap.

I started looking at the blogs attached to the twitter names and realized I’d missed out on a whole world of support. Cancer women. Amazing women who, despite having a different diagnosis, knew exactly what was in my mind. There was Susan @whymommy from Toddler Planet, Jenny @jaydub26 from Get out Gertrude,  Rachel @ccchronicles from The Cancer Culture Chronicles.

This week Susan and Rachel passed away on the same day and it broke my heart. Yes for me, but mostly for the women who share their diagnosis because for them, it hits too close to home. This week there were also two members of the GIST community who died but those didn’t touch me in the same way. I suspect it was because they were men. I know that sounds really callous but if I’m being honest, it’s true.

With these women and moms it was different. I didn’t often comment on their blogs and don’t suppose, other than Jenny, that they really even knew how much I followed them. Rachel was always there to comment on a cancer related tweet, to offer support in 140 characters or less. Jenny and I entertain/distract ourselves with Words with Friends on a constant basis now. She is an inspriation and I consider her a genuine friend, not just someone on my “friend list”. And Susan, she was my go to blog when I needed to find out how to do this mothering with cancer thing with  grace.

These are just a few of the strong women who face their mortality everyday and do it with such strength that I am in awe.

I am sorry I didn’t open myself up sooner. These women and others on Mothers with Cancer  know how to do what I’m supposed to be doing.

I believed I needed to find other people on the same medication, or with the same diagnosis to have something in common. I was wrong. These women already knew what I didn’t – that drawing from collective strength is so much better than going it alone!

It doesn’t matter what kind of cancer you have or what kind of treatment you go through. What matters is the shared frame of mind. Finding those who understand what goes through your mind in the middle of the night. Your fear of leaving your loved ones. Your fear of what lies ahead.

To these fabulous women and so many others, I want to say thank you.

Thank you for sharing your struggles as well as your strength.

Thank you for allowing me to share your experiences.

Thank you for writing my own thoughts much more eloquently than I do.

Thank you for showing me how to die with grace and dignity.

Thank you for reminding me to LIVE!

For all that and so much more, I will always be grateful!

Orchestra festival Day 1 – Mom I’m sick

You know how your daughter goes away for an orchestra festival and you think she’s all grown up and doesn’t need you anymore?  No? Well picture it. Or read the post below this one.

This morning at 6:48am (as opposed to this morning at 6:48PM), I get this text from my beloved first-born:

Day 1: lost my voice. Took 3 ibuprofen. Now I can whisper. Apple juice just stung. I can sorta talk though.

It was inevitable since both her sisters were home sick from school last week. Luckily for me they alternated days so I never had to be alone. All freaking week. But I digress.

Anyway, I texted back and told her to eat something or that many ibuprofen would hurt her stomach. Because I care.  Actually I think the first thing I said was “if you get worse call grandma and she’ll come get you”. Then I nagged her about taking too many ibuprofen.

The point is, she still needs me and texted me because she doesn’t feel good!!

And also, how in the world did her roommates get her to get out of bed at 6:48? Can they come live with us and be her alarm clock on a daily basis?

What is it about being sick that makes you want mom? No matter how old you are, being taken care of or just getting a little sympathy from mom makes you feel better.

This is reason #679 why I won’t let this cancer get me!!

This is NOT my favorite “first”

D1 just left town. Without me. Without any of us.

She’ll be in a hotel with lord knows how many other kids and very few chaperones the next two nights. She’s had sleepovers with friends over the years but she’s never hung out in a hotel 200 miles from Mama! I don’t like it.

The good news is she’s in my hometown no more than a mile from my parents’ house should she need anything. She’s got grandma on speed dial 3.

She plays oboe in the city youth symphony and it’s what she loves more than anything else. They’re at a state orchestra festival and will be rehearsing hours each day before nightly concerts. She’s going to be over scheduled and have so much fun that I doubt she’ll be ready to come back.

I was a teen once, I can appreciate how much fun she’ll have.  I’m happy for her but I also know how teens act in hotels. I’ve been there, done that and am just grateful it was before cell phone cams and facebook. She’s a good kid and I trust her but damn, is she really at this point in life already? How did we get from first teeth and first steps to first nights in a hotel without me?

It’s only a tiny glimpse into the independence she’ll soon have in huge quantities – and it’s a small warm-up for me before she leaves me for an even bigger trip. Spring 2013 she’s going to Japan with her highschool band for a week.

I’ll let you know when you need to start talking me down from that one!