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Archive for July, 2010

particularly inspirational ones in a book written by someone who I am blessed to call my friend. The book is “From Incurable to Incredible: Cancer Survivors Who Beat the Odds” by Tami Boehmer. In February 2008, shortly after celebrating five years cancer free, she had a recurrence and was now a stage iv cancer survivor. This book is filled with the stories of people who have overcome a grim cancer prognosis, some of whom remain cancer free, all of whom have already beaten the odds. Her website is Miracle Survivors: inspiration and information for cancer thrivers

I met Tami almost exactly a year ago, at a picnic being held by The Pink Ribbon Girls, a breast cancer survivors group, and Tami was talking about this book that she was writing. Eventually she was my roommate at two different conferences and she flattered me by asking me to proof read her book.

The book is published, available online and in some stores and she has made appearances on several local television stations. Tonight she had a book signing. My husband and I went over for awhile and I got to meet and talk with one of the survivors featured in the book. Three of the survivors who are in the book were there tonight and Tami asked each of them to say a few words. It is always inspirational, motivational, and just fills my heart with joy to hear from people who have kicked this. I am so proud of Tami and I am so grateful I have met her, despite the circumstances.

Tami – I wish you much success!

If you know someone who needs to hear stories of hope, buy Tami’s book for them.

“Once you choose hope, anything’s possible.” ~Christopher Reeve

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The history of Komen is that there were two sisters, Nancy and Susan. Susan got breast canser and died and during the fight Nancy promised to help end breast cansar (remember I misspell it on purpose). So far Komen has invested over 1.3 Billion dollars in non-profit funds to research, helping survivors and spreading the word about this disease. Current estimates are that in the next twenty-five years, ten million women could die of breast canxer alone, worldwide.

The local Komen Race for the Cure is on September 25th this year. My birthday. Last year I had a team, this year I have a team and I’m going to do my best to walk the 5K. I may be slow, but if all goes as I want, I’ll walk it. There was about 36 people on my team last year including my kids, mother, sister, stepmother, husband, friends, in laws and even a couple of ‘strangers’ and we raised close to $4,000. I’m starting our team a little later this year than I did last year but I hope to have as many or more than last year (I keep trying to post a photo but it keeps telling me they are too big), and to raise more money this year. 75% of the net proceeds stay in the Greater Cincinnati area (for education, screening and support programs) and the other 25% goes to the national Komen fund Research and Awards fund.

The local organization has been great to me during the last 15 months. The ladies who run it are amazing and thoughtful and wonderful. They have invited my family and I to several events, I even taped a commercial with them and other survivors at a local amusement park to promote their program for the cure. One of the women who runs it just checks in with me every so often to see how I’m doing.

You don’t have to raise additional money if you want to participate. You don’t have to participate. I will however ask unabashedly for your support of our team. I need the new treatments and the strides that are being made. I need this disease cured. I’d prefer it in time to get it out of my body. I’ll take it in time to keep my kids from having to face this. Komen is big, Komen raises a lot of money and funds a lot of research and they still find ways to help out individuals.

If you would like to join us, you are welcome. I’ll get an email when you register. There are lots of options, you can even register to “Sleep in for the Cure” and get your number and shirt but not actually be there. There is a special Kids Fun Run that you can register your kids for and you can even volunteer to work. I certainly didn’t expect to get involved with Komen like I did after last year but I’m glad I’ve been able to do so. Please support our team and help survivors locally as well as contributing to finding a cure.

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Now those who know me and love me will admit that ‘time’ and I don’t generally get along all that well. There are periods when I have it together and am on time and doing great and then there are times when I’m just late.

The relationship I’m talking about though has much more to do with my children than anything else, not so much time in relation to an activity or arrival time but more around overall time, days, weeks, months, years… and how that works with my kids. I don’t want them to grow up too fast, they do that quickly enough and with the added burden of ‘Mommy has cancer’ they’ll grow up even faster. I do however want to make sure that they know me, and, should the worst happen, remember me. The idea of dying and my son not remembering me is absolutely terrifying. My daughter would have memories but not enough. I’m not planning on going anywhere anytime soon and things are going well so that isn’t the top of my worry list right now but it is on my radar.

My daughter went to sleepover camp for two nights last week and she is going to go to a longer one as well. While I’m sure this is an emotional and strange experience for any parent the first time, I was no exception – it sure was for me. I just can’t believe she is old enough to go to sleepover camp. She had a ball! She loved it! It was a Christian camp and she is singing songs and they did Bible discussion and they went swimming in the lake and moonwalk/bouncer, there was a zip line that was too high for her liking, slept in ‘teepees’; big ones that house 10.

I’m glad she is growing up and like all parents I’d like for it to not go so quickly but at the same time I sometimes feel like I need it to go quickly so that if something happens I’ve been able to be here with them as long as possible. It is all so surreal some days.

She knows what is going on with me, we explain it as honestly and age appropriately as we can. I tell her when there are scans and what the results are and what they mean. I’m not graphic, I’m not blunt but both my kids have asked if I’m going to die, if breast cancer is going to kill me. It is on my daughter’s mind and on my 4 year old son’s radar, which is disconcerting. One of those really frustrating things that piss you off about this disease. No child should have to worry about this and have it be a legitimate fear. I understand that once upon a time in America it wasn’t unusual for a child to lose at least one parent or sometimes both due to illnesses or accidents but if just seems wrong in 2010 for a child to have to be worried about it. It happens but of course I don’t want it to happen with my kids, so I continue to fight and I continue to be thankful for each day but I still need more time.

(by the way, if you are a parent with cancer you may want to check out http://www.campkesem.org

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Well almost two weeks ago I had my 6th round of Adrimycin, known as “the red devil” in breast kansur circles. I have been WAY more tired on this one, bald, more nauseous (thank you for good anti-nausea drugs) and then got mouth sores last week which has made it really tough to eat and I’ve lost even more weight, not good.

After three rounds we did scans and things hadn’t gotten better since we had started the adriamycin but the good news was that I hadn’t progressed either. I had my fourth round and then got sick, see my previous post about that, and then did my other two rounds. A week after my sixth round we did scans, on June 30th, and on Friday the 2nd we went to get results. I really had very little scanxiety and was pretty calm walking in. I had been told the week I was feeling poorly that my liver numbers were a little better so maybe that was why.

My doctor comes in and says “You’re better. You can leave now, that’s all you wanted to know right?” Of course she was kidding. She did give me a copy of my scan but the basic info is “Widespread hepatic metastases continue to improve, with an interval decrease in the size of the liver.” = liver tumors are shrinking and my liver has decreased in size as well.

So we continue with adriamycin for now. We will adjust my dose down a little to help with the mouth sore situation and allow me to stay on it longer. The downside is that there is a lifetime maximum of this chemo you can get because it is so toxic, and just to make it interesting it can also damage your heart. I did have a muga scan (heart scan) last year because we thought I was getting this earlier and I had an echo-cardiogram last week. My heart looks good.

So I’ll be updating my lotsahelpinghands site for help with chemo dates and meals and we’ll keep at it. I’m going to kick it out of my liver and meet my grandkids!

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