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Archive for May, 2010

A year. WoW.

Mother’s Day will likely always be a bit strange for me. Last year I was diagnosed on May 8th. It was the Friday before Mother’s Day. I spent a lot of that weekend wondering if I’d be here this year for it. What a ride it has been and we are still on it. I look at all I have done, dealt with, people I’ve met, places I’ve been… and all the things I want to do still. I rejoice for those who have even small victories against this and any cancer, and I mourn with those who get diagnosed, deal with side effects, get bad news, deal with treatments not working and who love people we have lost to this. I have cried more in the last year than I think I have in the rest of my life combined.

Don’t get me wrong, I have laughed, I have laughed until I cried. I have met amazing, strong, fabulous people, dealt with caring wonderful medical people and even ran into my very own nurse from hell (I ended up bleeding all over me, the sheet and the floor and she had to clean it up. Listen to me next time you witch!). I never knew cancer ‘conferences’ even existed, I now believe there are conferences for EVERYTHING, you just have to find the right one.

I have also learned a lot. Not just about the things I never wanted to know, but about myself, about my children and how they handle things, about my husband, mother, father, sister, brother, stepmother, cousins, aunts and uncles. I have learned about my friends too. I’ve learned that people I thought didn’t even know who I was actually care about me. I’ve learned that people who I thought cared about me maybe don’t, or not as much as I thought they did. I’ve learned that people who were just ‘friends’ are so much more amazing than I ever knew and I know that there are a lot of people that I will never be able to repay for all they have done for me, from praying to cleaning to cooking to taking care of my kids.

Some of the things have been good, some have been eye opening, some have made me sad.

I’m grateful for a lot of the people I’ve met and some of the experiences I’ve had (chemo and surgery are not among those although I’m glad they worked). I’m grateful I’m still here but I’d be lying if I said I was grateful for this disease. I’m not. I don’t want it. I don’t want anyone else to have it. I don’t want a lot of the things that have come along with it but I’ll settle for kicking the daylights out of it and raising my children and seeing a cure.

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the hair is coming out again, but I suppose if you have to be bald, summer is the time to do it. Appropriately enough I was at a conference for Women with Metastatic breast cancer in Philadelphia when it started to come out en force. It was really nice to be in a room full of women who ‘get it’. Everyone there is at stage iv, most have active disease although some currently are hanging out with NED (no evidence of disease). I got to see two of my fav warrior women while I was there which was nice, and I made some new friends too. All of our talking there has led me to feel like there are a few things I want to say here, and I’ll admit up front that they all are not politically correct. I also know that several of my friends get concerned about what to say to me and what to not, or feel guilty when they vent about their problems and then they think about mine.

I understand that everyone has problems, they are just different. I don’t discount your problems because they aren’t a life threatening disease and I don’t expect you to live your life looking at it from my perspective. I don’t want you to be worried about everything you say to me, but I do ask that you be sensitive to my situation too. Some days I can laugh at some of the comments made to me and other times I want to say “Really? I’m the person you chose to say that to?”

Sheryl Crow was on Dr. Oz last week, and she is a fabulous spokesperson for early detection and cures and I am truly happy for anyone who is diagnosed with canser and who is ‘cured’. Whatever kind they had. Telling me a story about someone who was diagnosed at stage I or II and is now cansir free and has been for 25 years is not a story for me though, our situations are very different. At this conference one of the first things they did was ask for a show of hands, “How many have been diagnosed with mets for a year or less?” Maybe a quarter of the hands go up. “How many for 2-3 years?” – Maybe half. So at less than 4 years we have accounted for probably close to 3/4 of the women in that room. That doesn’t leave enough who are still with us after that third year. While I am doing my best and I really want to and plan to be here for a long time – when I reach that goal, I will be defying odds.

Hearing the word cancer will scare anyone, if it doesn’t there is something wrong, but that being followed up with “but it is highly curable and we expect to be able to take care of it” is entirely different from “it is stage iv and considered incurable” – yes both people have cancir but please understand that the perspectives are different. I’m scared all the time about whether or not I’m going to see my son even start Kindergarten let alone see my kids graduate from high school and college.

Please don’t tell me that “Any of us could be hit by a bus and die tomorrow.” Yes we could, none of us are promised tomorrow, but the likelihood of that happening is exceedingly slim for most people. In my case, the bus is down the street and I can see the headlights. I just have to make sure I can get away from it with my feet encased in concrete and it isn’t easy.

It is my sincere hope that none of you ever have to live with this, the reality of it is that about 1 in 8 of my female friends reading this will.

And one final note… I know this has been going on for a long time, a year this week actually, and I know a lot of people are wondering when I am going to be ‘finished’ or ‘better’, the answer is that I don’t know and that I probably will never be finished. The reality of a stage iv diagnosis is that technically I will be ‘in treatment’ for the rest of my life. Finished with treatment will mean I’m dead. Even when I get to NED I will still get regular scans and will probably be on some kind of medication to try to keep it gone. Right now I am on a chemo that is kicking me hard, I am really tired and often kind of nauseous and not terribly hungry. Most things are just not appealing.

I know this is strange when we are so used to people finishing treatment and ‘that is that’. My hope is to meet NED and keep at this for a long time, I have two beautiful children to raise, I’m not finished yet.

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