Merry Merry Merry Christmas

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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This is troubling

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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Maybe they’ll listen to Dr. Oz

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.
http://www.sharecare.com/question/vitamin-d-fight-cancer?partner=droz
http://www.doctoroz.com/videos/daily-dose-vitamin-d

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Elizabeth Edwards, the beast is after another one.

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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Busy Living Life

I looked up and realized it was December and it had been over a month since I had posted. Wow. Fortunately I’ve been busy. Living. Remodeling. Enjoying holidays. Getting my daughter’s ears pierced, helping with the book sale at my daughter’s school, working on getting things together for the art fair that I’m involved with, visiting friends, having friends visit, meeting new additions to the world (C.J. and Noah), getting involved with the Girl Scout Cookie sale in our area, and still having chemo.

I remember being terrified a year ago that I wasn’t going to be here for this holiday season. I’m still scared but not as much as I was then. I feel good, I look good (so everyone tells me) which makes everyone think I’m fine. I get tired. I get freaked out, especially when I go for treatment. I can almost think that this isn’t really real until I get to the doctor. I actually have gone a half a day without thinking about having cantsur. Then I come back back to reality, take a deep breath and move on. I had good scans in October, moderate improvement since June and marked improvement since April so right now I’m good. I’m wishing everyone a happy and healthy holiday season and I’ll be back soon. I have a topic on my mind that I think we need to be a bit more upset about but that is for the next post.

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