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Archive for February, 2011

Yay! but I feel so guilty…

“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.” Elizabeth Stone quote

Most of the time I am mom. My kids are with me 95% of the time that they aren’t in school. I have an opportunity to travel without them. I won’t see my kids for 9 days. I have NEVER been away from either one of them for that long. Not in their entire life. I’ve been away from my son for 6 days once, but my daughter was with me then.

I’m excited to go. I get to go to two conferences that will be educational and good for me and there will be a lot of great energy and I’ll meet new people and see ‘old’ friends who I cannot wait to see, and I’ll get to visit with a couple different relatives and another friend. I get to do a lot. I get to go to the beach. I will miss my kids awfully, terribly, every day. Yes I know that is improper grammar but it is accurate. I’ll also smile and laugh and have a good time every day.

My daughter has a tough time when I’m gone like this. She cries about once a month because she doesn’t like to be away from me to go to school. No it isn’t an unhealthy attachment, it is thanks to the d*$% cnaecr. She is worried that something is going to happen to me and she isn’t going to be here to help. She worries that something will happen to me and her little brother will be at home alone with me and scared. She worries about things that no 8 year old should have to even think about let alone consider as a real possibility. It doesn’t matter to her that I am doing fine right now and that her brother is getting older and more capable (he just turned 5!). She worries that since I am ‘sick’ that something will happen.

My son will just miss me. We are together every day pretty much. He goes to preschool several half days a week but most of the time he is with me. I’ll arrange for them to be cared for and to have a good time but they’ll miss me and I’ll miss them and I’ll be happy to be with my friends at these conferences (for a second year in a row!) and then I’ll be excited to return home to them. Hopefully with new energy and drive and ideas and we will move forward. I’ll also worry about them and wonder about them and think about them and call them every day.

So yay! I get to go and learn and share and rejoice and mourn and talk and listen and smile and hug and get some time for me, but I feel so guilty about leaving my kids for that long. So I’ll come back better for the time away from them, just as some day, when they leave me, they will leave better for the time with me.

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How do you?

How do you tell your kids that you have kansur? How do you explain it? How much do you tell them? How do you reassure them when you are falling apart inside? How do you sing lullabies and read bedtime stories and not cry? How do you tell them you are too tired to walk down the street or go to the park or the zoo or even do more than sit on the porch and watch them play? How do you explain that you really want to fix their food but you are so uninterested in food and it all smells so bad to you that you really cannot handle being in the kitchen? How do you try to make them feel better about a bald mom?

How do you not let them know how scared you are? How do you not feel guilty for going to two conferences and being gone for 10 days? How do you not feel like the worst parent in the world when you are in a bad mood on top of everything else? How do you do all the things you want to do with them? How do you figure out what to write and what to record in case you aren’t here for them as they grow? How do you remember everything that you want them to know?

How do you make sure they know it isn’t their fault?

How do you answer when they ask if you are going to die from cancer?

How do you make SURE they know how much you love them and that you would NEVER voluntarily leave them?

How do you dry their tears when they get scared by it all?

How do I do this?

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Diving with sharks

I was in the “treatment suite” a few weeks ago and talking to another bc warrior woman who was telling me about her plans to take her husband and son and go away for spring break. We ended up talking about whale and dolphin watching and that segued to shark diving.

First, I have a fabulous story about diving in Bonaire, it was the morning of September 11,2001, yes that morning, we were on a dive boat blissfully still unaware of the tragedies taking place. We were on our way from the first dive (on Bonaire’s only wreck at the time) to Klein Bonaire (a small island off of the main island) to go on our second dive. I’m standing next to Jackson, our dive master for the morning and we see fins off to the side of the boat. He steers towards them and then looks at me and says “Aren’t you getting in?”. Realization dawns on me and I take off for the back of the boat grabbing my mask and snorkel on the way and end up in the water with a pod of dolphin. SO cool! Then on our second dive we got to see seahorses! Also very cool.

Okay, back to the sharks. I mentioned to her that while I have no desire to jump out of a perfectly serviceable airplane (no I don’t want to sky dive), I would love to dive a shark cage. For those of you who do not know what I mean – it is a cage in the water and you dive in it with your scuba gear on and they attract sharks to the area (they are not in the enclosure with you), usually Great Whites – you know… Jaws. She, like many others, told me how crazy I am and this just came out of my mouth “What’s the worst that is going to happen? I’ll get eaten? This cansir is more likely to kill me then those bars are to fail. We dive with sharks every day.”

As I thought about it more and more, that is the best analogy I can come up with. I am diving with Great White sharks every day except I’m not in a cage that is going to keep me safe. I’m swimming from boat to boat. What is it that Dory says in Finding Nemo? “Just keep swimming”.

So where is land?

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“What is your goal in life?”

I went to go see a more “alternative” doctor about a week ago and he asked me that question. I realized I don’t have a good answer for him, which by default means I don’t have a good answer for me. And yes, he meant other than beating cantsir and raising my kids. I’ve been thinking about it a lot this week and it is weird. I have been so caught up in just staying alive that I’ve forgotten to dream. My dream is to be alive in 5, 10, 15, 20, 30 years. Everything has been “raise my kids”, “see my children graduate from college”, “be at their weddings”, “meet my grandkids”, what about what I want to DO.

I have things I want to do before I die. Dive Chuuk Lagoon in Micronesia, the Mediterranean (ancient Alexandria sites) and the Great Barrier Reef, start doing photography again, visit Greece (and Italy and Germany and Russia and Switzerland and England, and Australia, and New Zealand and Africa and and and you get the picture), spend the night in Cinderella’s Castle at Disney World, see the Grand Canyon, go snow skiing more, spend more time on boats, but what do I want to be when I grow up? All of the things listed would be great but they’ll be better with my family. Of course I have to hit the lottery before most of them will happen.

This has made me feel like a high school senior again. The world is full of possibilities. What do I want to do? My whole world revolves around my health and my kids right now and has for almost two years. I feel good right now, I look good right now (got the expanders replaced!) and what it all adds up to is that I feel normal right now. Right now the idea of not living for another 30+ years seems ridiculous. Now I need to make that reality and I have two wonderful reasons why, both are blue eyed and beautiful and are sleeping upstairs even as I type this, but they will have their own lives and I have to consider what I want to have when that happens and what lessons I want to have taught them regardless of how things turn out.

So now I have to figure out “What is my goal in life” – LIVING is always good and that encompasses a lot – now to figure out the details of what that means for me.

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My Super Six

My daughter is selling Girl Scout cookies and this year our council changed to a different baker and this changed the selection.They have now, what they call, the Super Six. Right after I was diagnosed I read a book called “Crazy Sexy Cancer” by Kris Carr (Awesome book by the way) and she talks about putting together your own cancer “posse” so you can get the support that you need and that works best for you. I refer to mine as the Super Six.

Darlene, Eleanor, Julie, Tami, and me make up the Fighting Five and you add my friend Diane and you have my Super Six.

I’m asking for prayers for every one of them.

All of us are stage iv survivors and right now several are really struggling. One has brain mets that are not cooperating. One is experiencing a lot of pain, one recently had brain surgery, one is showing improvement in one location and growth in another, one is contemplating discontinuing treatment. Two of them have real difficulty with chemo and other standard drugs, one is running out of chemo options. (Just to keep any friends from panicking, none of those are me, I’m on a chemo break until scans in March) Four of us have children under the age of 13. A couple of them live a long way from me and I don’t get to talk to them or see them nearly often enough.

I cannot imagine my life without any one of them and I would just as soon not have to deal with it. So, please, pray for healing, pray for good decisions to be made, for answers to present themselves and for pain to be gone. Pray for the right treatments to be found, new options to present themselves, and to have the support needed. Pray for the families too while you are at it. There is never a break from this, especially for those who live under the same roof with us, it is always there even when we are acting like it isn’t.

Thank you, thank you for praying for my friends and thank you for praying for me.

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