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Ashley’s long fight

It is with a heavy heart that I report Ashley passed away on August 17, 2011. After fighting hard for over two years she lost her battle with IBC. Thank you to all who supported and encouraged her during her fight. Donations may be made to Hospice of Cincinnati in her name.


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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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Merry Merry Merry Christmas, “I love this Christmasy time of year.”

I’m here for another one! I’m still amazingly grateful and I’m sort of taking for granted how well I am doing. I know I am but it doesn’t stop me. I spent a bunch of money today on supplements because I want to make sure that I continue to do what I can. I have scans again next week so we’ll get another update. I’ve been playing games – we got several Wii games for Christmas. Still unpacking my kitchen from the remodel. My husband is off this week and we are planning to spend time doing things with the kids. I have two or three conferences to register for and work on airline reservations and see if I can get any help with getting to them.

On that note, I realize that there are other survivors, some of whom I do not know, who read this blog. There are some excellent conferences out there for people who have been diagnosed with cacner. The Annie Appleseed Project has a fabulous one coming up the first weekend in March on Complementary and Alternative treatments. This was the most educational of the ones I went to last year. I met amazing people and learned a ton and the food was OUTSTANDING! All organic and yummy.

The Young Survival Coalition has a conference for Young Women effected by breast cantsir. That one was geared more toward early stage but there were even women there who are at a high risk but who don’t have it. I didn’t learn as much there but met some great women and had a fabulous time. I’m sure there was a lot of good info it is just that most of it didn’t apply to me.

Then there is one sponsored by Living Beyond breast cansur that is geared directly at those who are at stage iv. A variety of ages were there, I met a 26 year old and I met a 76 year old. The best part is that you are walking into a room full of women who ‘get it’. Again, lots of excellent information.

Caregivers are welcome at all of these as well and I know my mom learned a lot as well as got to meet others in her position and that was good for her. I’m happy to answer any questions about any of these that you might have. I’m also interested in learning about other gatherings. The energy that you get and the motivation and the hope is uplifting and inspirational. So… join me and my friends and learn and prevent and fight using more than just chemo, radiation and surgery.

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I mentioned in a post a few weeks ago that there was a topic I wanted to bring up because I’m not sure why we aren’t hearing about it. When I went for treatment in November my doctor told me that we were switching chemos. Kind of took me by surprise. We generally switch when we have “reached maximum benefit for the amount of toxicity being put in your body”, so as long as it is working more than it is hurting your vital organs, you go with it. We hadn’t determined that to be the case with the Adriamycin yet so I was not expecting her to say that. The manufacturer wasn’t making it at the time and the supplier as well as the office was out of adriamycin. ?!?!?!?!

Evidently there is currently a shortage of adriamycin. Go figure. It is chemo! It is a life saving drug! What do you MEAN there is a shortage! As I looked into it I found out the FDA has a page of their website that is just for drug shortages. Another survivor told me her brother, the pharmacist, indicated that they are having this problem with several chemo drugs. So yes, second hand info but I trust this lady.

Fortunately for me, the base medication of adriamycin, doxorubicin, is also available in a slightly different form called doxil, so I was switched to that (and am glad my hair didn’t fall out again as a result). I am lucky. I guess. If you are going to be in this situation it is nice that they have another option but what about all those who are on things that don’t come in multiple choice? I mean, really, how do you run out of a chemotherapy drug, this isn’t aspirin folks.

The upside of the switch for me is that the side effects aren’t as bad. The nausea is way less but I’m still exhausted. The downside, it takes two to three times as long to get the treatment. But regardless, I think this is crazy.

Another thing that is drug related is that the FDA has disapproved Avastin as a treatment for metastatic (stage iv) breast cancer. Evidently it wasn’t helping ENOUGH women to a high enough degree; so now, even though you can still get it as a treatment, your insurance may not have to pay for it. Oh, did I mention it is really stupid expensive? Convenient huh. It helped me, it helped at least 2 other women I know personally and I haven’t spoken to anyone who felt like it didn’t help. The question was just whether it was the Avastin or the chemo they were taking along with it that really was doing the trick. Avastin – in simple terms – keeps new blood vessels from growing to the cantsir, starving it. It is called an anti-angiogenesis drug and is often paired with a more traditional chemotherapy, so you are attacking it with one drug and starving it with the other, but it didn’t ‘help’ enough women to continue to make it available to women with advanced breast canzur.

Seriously, we can use every weapon we can get. Even if it only helps 50% or only helps us live 6-8 months longer, that is a lot when someone is telling you that you don’t have a lot of time. If you can do 6 things that all help for 6 months, that is THREE YEARS! Metastatic kancer, breast or otherwise, doesn’t get the attention because most doctors and frankly a lot of people, just figure you aren’t going to survive. You know what, AIDS is incurable, diabetes is incurable – both are considered chronic. Once upon a time not so long ago, AIDS was considered a death sentence, now it is looked at as a disease someone can live a long time with. If you can’t cure me yet, look at me as having an illness that I can live a long time with and treat me that way. Don’t take options away.

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When I am talking to people about my diagnosis I often tell them that if they do only one thing to help prevent this from happening to them that they should take vitamin D, preferably D3. With calcium and vitamin K ideally but at the very least Vitamin D. It is inexpensive and easy.

I also tell them that EVERY woman I know who has breast cansr and who have had their Vitamin D levels tested were low or on the low end of the normal range. Including me. I was on the low end of the normal range, so technically I was fine but as I read more I believe our ‘normal’ range is too low. I drank an unbelievable amount of milk, ate cheese, spent time in the sun and should have been just fine as far as I knew. When I was a teenager my Dad once called my Mom and asked “Do you know how much milk this child drinks??!!”. I had moved in with him and was going through it quickly. As I got older my Dad would get on my case because there were times where most of my food intake for the day was milk. Anyway, you get the idea, Vitamin D should not have been an issue in my world. I certainly wasn’t expecting to come back with my level where it was.

Dr. Oz’s show today is about preventing cancir. He just did a whole segment about Vitamin D, he called it “The ultimate cancer fighting vitamin.”. He even talked about it directly in relation to breast cansur. He says that the sun is the best source but that a pill supplement of 1000 units a day is the best place to start. He then went over food ideas and then said that Vitamin D in pill form was a foundation of getting enough.

A doctor at one of the conferences I went to last year suggested 1000 units per 30 pounds of body weight. The warrior women I know who take supplements all take D as far as I know. Most take more than even the 1000 units per 30 pounds since we already have it and our bodies don’t process things as well so we don’t use resources as effectively at ‘healthy’ people.

Here are two discussions about it from the www.doctoroz.com site.

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This woman has had more than her share of things to deal with, the loss of a child, the mess her husband made of things and breast cannsir to boot. Sadly, today the news came that she is discontinuing treatment and has been told that further treatment would be “unproductive”. Reports also say it has spread additionally but do not mention specifics. She is at the place that so many of us _______________ (fear, dread, try not to think about, don’t ever want to get to.). Her kids are 28, 12 and 10. They should NOT be losing their mother and they shouldn’t be losing her this way. She has been asking for eight years, she wants to see her kids get out of school. I can completely relate. That is what I pray for every night… to raise my children. Seeing a grandchild would be awesome but just getting my kids to adulthood. That is something I really want, I’m sure she does too. I cannot imagine what she is going through right now and I try not to because I know that someday, it could be me getting this same news and I may have to deal with this exact situation.

I don’t know what treatments she has tried. I don’t know if she has looked at alternative treatments or whether she takes supplements or has changed her diet or any of those things. If she hasn’t I hope she does.

My prayers go out to her and her family. I hope the doctors are wrong.

Edited to add: 12/7/2010 We received the news today that Elizabeth Edwards passed away this afternoon. Another mother taken from her children far too soon. I am surprised still, mostly because of how quickly this all happened. It is tough to be a stage iv warrior when someone with this high a profile loses the fight, it can be disheartening. I have to remember that her story isn’t my story and nothing is written. None of us know what is coming or how long we have but this is a case where longer would have been better.

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