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Archive for January, 2011

Another beautiful canser fighter, Daria Maluta, flew to heaven this weekend. I was looking at her blog this morning and six days before she passed she posted about this: “I am feeling ever so rushed to get things done knowing at any time I could be rushed to the hospital never to come home again. And then there are times I think I might have months to live. It’s a confusing weird place to be in.”

Fortunately I generally feel good and should have many more years to live but it doesn’t mean that I don’t wonder. In 2010 I met Lisa at a conference in February and she was doing well, she died in June. My friend Treena was declared cansir free in March 2009, but it came back in October 2009 and she died in January 2010. This thing can turn on you quickly and sometimes it seems without warning. For each of these women it was the mets in their liver that killed them. Scary for me as my liver has been described on multiple occasions as looking like swiss cheese. My onc says all the time that the important part isn’t so much the amount that is in my liver as how well my liver is working. You can have one tumor that is causing liver failure and you can have multiple tumors and your liver can work fine which is my situation but really, there is no telling.

I understand Daria’s comments only too well. On my list of things I want to do is get my house/desk/paperwork purged and more organized and get the important paperwork taken care of as I’ve avoided it for the last almost two years. Most important though is to work on things for my kids: photo albums, journals, letters, and tapes. This may seem morbid to many people but when I get all of those things into place I think I’ll be less panicked about everything. I worry that if this thing starts to get out of control that I don’t have enough things together for my kids. When I can get this stuff together then I can focus better.

One of my friends, Chris, tells me all the time that she sees having all of her affairs in order kind of like taking an umbrella with you on a day where rain is predicted. We all know that if you are prepared, the rain doesn’t come but if you forget that umbrella you end up walking home in a downpour. So in an effort to keep the skies sunny, I’m going to use the next couple of months to get things together.

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because that is what we do next. How do we do that? A hot shower, a blog entry that you then spend an hour second guessing while you fall asleep, counting our blessings, thinking about friends, chatting on facebook with other survivors who are up that late, and realizing how much worse our own situation could be at this moment. Then figuring out what we would do next if the next scan says it is growing.

I have a friend who said to me this week that I was ‘fortunate’, she may have even said lucky, that I can tolerate chemo. Who’d have thought. Two of my friends physically cannot tolerate chemo, it almost killed them. They have to look for other options, they have to vigorously pursue alternative treatments and be even more careful about what they eat, and they have to sometimes consider whether one of the less harsh chemos is worth the risk.

I do count my blessings, starting with the two angels I’ve been given to raise and it seems so impossible that I wouldn’t get to. My family, my friends, my dog, even my health – notice something about most of my blessings, they are people (or animals) – they are living breathing creatures who care about me. I care about them too. I rely on them, I pray for them, I spend time with them. We laugh, we cry, we joke, we complain, we take photos, we exchange coupons, recipes and ideas. We do talk about the bad stuff, we all have things that we would prefer were different, a special needs child, a sick parent, an unemployed spouse, money issues, an incurable disease.

A year ago today a beautiful little girl who had just turned two lost her mommy. A woman with my daughter’s name lost her daughter, a loving husband lost his wife. I’ve never met any of them but last night I REALLY wanted to talk to her because by now we would have been even closer than we had started to get in the six months before she died, I miss her too. I didn’t even realize the anniversary until I had finished my blog last night.

Today someone else will lose a mommy, a daughter, a wife to this thing. Every 69 seconds somewhere in the world a woman dies of breast canser.

Still…this morning is better, a new day brings another sunrise and a brighter outlook once again. Count your blessings, they aren’t as difficult to see as you think.

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and you can’t really tell anyone. Sometimes you can’t really even call another survivor/fighter/warrior/thriver, sometimes you just have to cry and be scared. And by crying I mean the kind of body wracking sobs that hit you when you lose someone you love and you just don’t know which way is up.

No it isn’t pretty and I’m not looking for a bunch of “It will be fine” and “You’ll make it” and all the meant to be comforting comments that people make. The truth of it is that it isn’t fine. The truth of it is that you get scared, you get angry, you fall apart. Then you pick up and get on with it.

You get jealous too. Yes friends, sometimes I get SO jealous of you that I can’t see. Sometimes I want to just scream. It doesn’t mean I don’t love you, it doesn’t mean I don’t want to be around you but sometimes I wish I was like you and I didn’t have this. I’ve only ever really gotten upset with one person that I can think of over something that they were complaining about and I didn’t even tell them.

I don’t want to be afraid that I’m not going to get to watch my kids grow up. I want to see my kids get married, I want to meet my grandchildren. I don’t want to walk around worried that this thing inside me is growing. I don’t want to feel like I have to go do everything RIGHT NOW because I might not get the chance later. I don’t want to wonder if my kids will have to hold onto the memories we make right now with everything they have because they are afraid I won’t be around. I don’t want everything colored by this but the truth is that it is. Every once in awhile I manage to not think about it for maybe an hour or two but it comes back and sometimes it is just like a kick in the gut.

Yes I know that any of us could die at any moment, a freak heart attack, a car accident, a fall, any number of things could happen but most people don’t actually think about it every day. A lot of people that I know do think about it every day. Most moms aren’t trying to make sure their spouse can handle it without them.

Even calling another survivor is sometimes tough because even though they know exactly how you feel and they can completely empathize, they want to make you feel better. Sometimes it is because seeing you fall apart reminds them that we are all vulnerable and scared and they may not be in that place. Sometimes you don’t want to call them because you don’t want to bring them to where you are. But we still invite each other to call and we want to be there for each other and I do want my friends to call me when they feel like this but I’m sure they don’t always. Because I don’t always.

I don’t want anyone to feel sorry for me. Sometimes it is just so overwhelmingly scary and I share the bad with the good.

I try not to worry. I read a great line in a book recently, it went something like, worrying isn’t going to add any time to your life. It isn’t. Being scared isn’t either but I’m human and I’m a mom and I have an aggressive stage iv cancer.

There are a lot of people dealing with this. I know a lot of women who deal with this and still… sometimes it is lonely and tonight I’m scared.

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Well I had scans on the 6th. Overall the news is fine. The stuff in my liver is stable since the last scans in October. There is one new spot of something on my lung but it is only about 4mm and we don’t know that it is c, it could be from an infection or something and we are going to watch it.

Since there was no significant change in the tumors in my liver my oncologist recommended taking a chemo break. With chemo you go until you have reached the ‘maximum benefit for the amount of toxicity” so basically since it isn’t shrinking the canstur it isn’t worth the damage it could do to my body and specifically my heart. I’ll have scans again in March. I continue with my ‘maintenance’ treatments: once monthly drip of Zometa for my bones and a daily pill – Femara, which is an aromatase inhibitor and prevents my body from producing any estrogen but in the meantime no active chemo.

Which is kind of scary. It is still there but we aren’t attacking it particularly.

From a medical standpoint it is a good time to check out alternative options, to recommit myself to improving my diet and exercise, finding out about and using additional supplements, getting back to the intuitive healer and lowering my toxic burden. Personally, it is a great time to go and do things with my kids, of course it is cold and yucky out and we just did some work on our house since I was feeling pretty good and financially it isn’t a good time for a vacation but I’m going to swing something soon!

Additional upside information is that those conferences are coming up. I’d like to go to the YSC conference in Orlando but going to the Annie Appleseed conference is higher on my priority list so if I have to pick one that will be it. I’ll also get to see one of my cousins while I’m down in West Palm for that one.

I’m not stupid or delusional. I know this is an aggressive version I’ve been diagnosed with. I’m going to need to really commit and frankly some days it is easier than others but this is where I am. It may still start to grow again and back to chemo we go but in the meantime I can hit it from other directions and I can enjoy life. I want to finish getting the house back together after the kitchen work, I want to work on scrapbooks and taping things for my kids. I need to get all the legal stuff together because yes, even with a stage iv diagnosis I haven’t done that yet. That is in addition to helping with the Girl Scout Cookie Sale, working on the art show and being with my kids and family.

It certainly isn’t over but I’m not going anywhere anytime soon.

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