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    Pinktober has been rolling along very quickly, and I have been finding myself very annoyed at the whole pink thing. That’s not because there isn’t anything good about it. There is some real fundraising and activism happening mixed in with the Pinkwashing. All of that stuff is just heating up the conversations, which is good. I have been writing, a lot. I wrote an article for Associated Content on Making Your Support Count, and the editors changed the title but they put it on the front page of Health, so that was good. I’ve also distracted myself with some political writing, which as my daughter would say, is hecka fun. My article on Mitt Romney stirred the pot mightily and even upset some Mormons. Not that upsetting people is my goal, but stirring the pot definitely is!

    Why is pink month so hard? Simply because I can’t escape breast cancer. It’s everywhere. Some of the pink overwhelm is really irritating, especially the pink boxes of stuff that indicate that donations are happening without any indication of how much or to whom. That stuff just makes me want to lose it. I didn’t post at Everyday Health for a couple of weeks, ostensibly due to the stomach flu making its rounds, but I really am pissed off about pink month so my last post says it all.

    We also lost four on the IBC list this week. Four. Damn. That just sucks, really. So hard for women still scrapping to stay alive to see our sisters fall.

    So, where have I been? A bit scattered, a bit annoyed, writing some stuff, hating the sight of pink, glad that I’m still here, looking forward to when pink is no longer in my face quite so much. Ready for no bad news on the IBC list. Thinking of my friend Susan at Toddler Planet who is right smack in it, and my heart screams, NOT FAIR. She’s dealing with it much better than I am.

    This evening my son and I are off to the Dardanelle, known previously here as Camp Medicine Wheel. I can’t wait. Maybe when I get back I’ll feel more settled. I still have lots of real stories of real women to post. Right now I’m a little too flummoxed about the ones we’ve lost. Look for a happier, more grounded advocate when I get back.

    Time to get packing…

    The small bullet was the sinus infection. That’s a little bullet. The thing is, feeling rotten always makes me anxious. Sinus infections feel rotten, so I’m really glad the sinus rinses Sudafed and sleep did their job.

    Thinking of dodging bullets calls to mind the enormous one I dodged nearly five years ago. I am thrilled that people who are just now facing the same diagnosis I did are finding me here! I remember when I was sick with chemo, bald, discouraged, trying to keep my chin up and I would see someone who had been there and took the time to talk to me. It felt so great to see a woman healthy looking and strong, with a nice head of hair, on the other side! My diagnosis was tough, so if she told me that hers was too I felt even better. At that time I couldn’t imagine what my life would look like now, only that I would do whatever it took to stick around and find out.

    This weekend I am focused on a few assignments, so not much rest for the next few days. I have a writing deadline on Monday, and a new job focus at the hospital. We are starting an outpatient pain clinic for pediatric patients, and I am the primary therapist. We start from scratch on Monday, woo-hoo!

    To bed, and a busy few days coming..

     

    It’s started…

    My son is down for the count, miserable with a cold of the snuffly, coughing, headachy, flat variety.

    Last week I had a day when I just felt as if a truck had run over me, for no identifiable reason. I think I’ve decided that we both were exposed, he incubated it and got mightily sick, and I am fighting it in this weird no-woman’s land of immune wars. This happens to me sometimes. I’ll battle a bug for a week or two, not get really sick but not feel well, and eventually I win. Or not. It depends partly on luck, and if I’m lucky, my pre-emptive strikes will be effective.

    Many years ago, when I was teaching at the massage therapy school, one of my colleagues commented at the end of the teaching day that she was canceling her clients and going to bed. At the first sign of a cold or flu, this is what she did. No delays, no bombardment with supplements and home remedies, just STOP amd REST.

    “When I feel sick I go to bed”, said she. She reported that it seldom, if ever took more than a day. Many times she averted the bug completely.

    I am not that adept. Usually the first sign of a bug (feeling very tired) is greeted by me with resistance. It is not until later, when the cold is closing in, that I remember that feeling and that I should have stopped and gone to bed! Right now I am paying attention. My boy is hacking away, my muscles ache but I can still breathe, so I am going to bed and feeling grateful that tomorrow is a low pressure day. Today I did a whole lotta nothing so I’m hoping tomorrow I will feel much better.

    Of course I still have my other tricks too. Emergen-C, Zicam, honey and lemon, etc., all are good and I will dose with all of them, but sleep trumps them all!

    Off to bed, hoping for the best.

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    I am delighted, thrilled, excited, all of the above, surprised, totally tickled.

    I took an assignment on Associated Content because I thought the story was interesting, and it was for a good cause. Yahoo was asking people to share stories of where we were on September 11th, ten years ago. For every contribution received, a donation would be made to the September 11th memorial fund. It was a no-brainer.

    I was not in the U.S. when it happened, and I will never forget what it was like to be on foreign soil, away from my family, when the my homeland was attacked. I wrote my story for Yahoo, and you can see it here!

    I love being a writer, I love writing, and I love it that the folks at Yahoo thought it was a good story. My takeaway from this is that doing what I love always works, and I never regret following the path that makes me happy. Making a contribution feels good!

     

    Ah, the work of establishing an identity, coupled with raging hormones…my children are working so hard!

    Now, what’s my excuse?

    Actually, I can’t complain because at nearly 50 I’m pretty sure what I want to be when I grow up but I’ll never grow up, ever, so I’m just going to continue having fun. As long as I do this daily I will keep moving towards what I want to be when I grow up. I was reflecting on this today as I thought about this website, which is nearly a year old, born right around my birthday last year. My original vision was to create a site that would help people, but I didn’t know what that looked like. I floundered around a lot, trying to figure out what my site wanted to be when it grew up. I noodled around the internet into the wee hours, and slowly learned how to manage my own little queendom as I waded through spam and created and trashed numerous pages. Sometimes I didn’t blog at all because I didn’t know what I was supposed to be blogging about, forgetting that I blog because it makes me happy. Today I was berating myself because the site is, in my mind, a poorly organized ramble of disparate resources, until I logged on and found a comment that told me that this weekend someone found this site and was encouraged.

    Amid the sturm and drang (storm and stress, a la Beethoven) I am coming to some clarity about what I’m doing here, and the results should start taking shape in the next few weeks.

    And my teen, my tween and I?

    My tween had a call back for the Fall musical today, and was a handful and a half. My friend called her a wild cat. She’s 12, and everything is just so monumentally imperative and urgent! I take a deep breath and try to stay on for the ride. We worked together on her audition pieces and had dinner together before her audition. My husband auditioned as well, and they just got home a little while ago, wound up probably until the wee hours tonight.

    My teenager is right on track, already on top of all of his classes except algebra, because he bombed a quiz due to girl distraction. Here it comes…

    As for me, I am suffering from too much good stuff to choose from. Much as I wanted to be in this next musical, I did not audition because I know I would be overstretched. The children’s hospital where I work is starting an outpatient pain clinic, and I am the primary therapist. I love the hospital work, I just love it! I worked on Saturday with inpatients and came home feeling blessed.

    Soon the drama club will be resuming, and there is the possibility of adding another school and another club.

    I have an advocacy workshop coming up in October and I hope to go backpacking again once more before the season is completely kaput. So alas, eight weeks of intense rehearsals would be too much, and I am jealous all the same!

    I’m writing for fun, and trying to get better at it.

    This site, however, is my baby. It is now an unruly teenager and needs to be directed!

    What I want to do here is to reorganize a little so that anyone who comes here can find resources. I want to sleuth out more great links, as well as write some good posts about ones that I already know about.

    More inspiring stories, more humor, more simple how-to’s like how to keep your fingers from going numb when you’re on Taxol for example, more just plain ol’ uplift and leg up. More tools for more varieties of hard knocks!

    As for posts, I am going to experiment and give myself permission to write about whatever I want, as I did when I went through treatment. My life was an open book, and somehow that was so liberating! A teacher of mine once told me, “the personal is the most general”, and scribbling is as good for my health as exercise and vitamin D.

    Until soon…

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    My Mom is a writer. She just published her third book of poetry. Go Mom!

    My sister is a writer. She published a short story once, but unless she publishes, she doesn’t show us anything!

    I discovered that I was a writer on my Caringbridge blog. I guess that’s another unexpected gift that cancer gave me. For a long time, I thought that writing was Mom and Emily’s gig, not mine. I had a long chat with my mom about it. She told me that even my brother Paul has published an editorial in the local paper! Who knew? I already knew he is a fine musician. I guess I come from a talented family!

    So, I’m embracing this new calling of mine. I have been blogging for awhile over at Everyday Health, and recently I got an e-mail from my contact there that I would be reporting directly to the editors, because (drum roll….) they like my writing!

    I’ve sorta been quiet about it. It’s my own private thing, or has been. When I started my blog at Caringbridge, I did it to help me get through the toughest time of my life. It was for me. When I started getting comments from people I had never met, it felt wonderful to know that what was so satisfying for me to write had value for someone else. Still, I would not call myself a writer.

    Now, I am summoning my courage to write “on purpose”, and try to get good at it.

    Will you tell me what you think? Give me some feedback?

    I just published an article on Associated Content. It was an assignment. I thought it would be fun, so I took it and did my best. Will you follow the link and take a look? If you like it, will you become a fan? If you like it a lot, will you tell your friends?

    In the meantime I will (as Jo said, in “Little Women”, one of my favorite books of all time) up and take another.

    Onward!

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    It’s late, my eyes are bleary, but I had to make the change and post the scoop…

    Lately I’ve felt a bit at a loss about what I am wanting to write about. The comment from my dear Aunt Darlene pointed out to me how much more !*&# I have survived than cancer…that is, cancer is not the only hard knock I have to write about, just the most recent (and the nastiest) one! Being a cancer survivor has changed me, and facing that particular hard knock has been the defining paradigm shift in my life. To face it squarely I had to look hard at the big picture of my life of hard knocks and resilience. I had to dig deep for all my resources.

    Graduating from school doesn’t mean it you’re done. It means your qualified, you’re an expert.

    I am an expert at surviving and bouncing back, and sometimes I think I look at the world completely sideways and that’s ok. I like it. I’ve completed graduate school, and like any decent scholar I intend to continue exploring new developments in my area of expertise. I will continue to write about cancer, fighting it, curing it, getting through it. I’ll also write about whatever seems relevant to surfing the crazy life waves and staying on until they break.

    I’m up late because I had a writing deadline. I am beginning to indulge more in this passion of mine, to write. It took me until I am nearly 50 to discover that I love to write! As my unquenchable son would say, who knew?

    Yet another delightful discovery. I probably wouldn’t have figured it out if I hadn’t had that nasty cancer to write about.

    And for the record, even if that nasty beast were to come back I’m still a survivor and I still got my diploma. I’m an expert, remember? Another hard knock and I’ll know what to do, although I like to think I’ve had my fair share for one lifetime. Right now I’m good. Right now I am having days when I don’t think about cancer. I used to dream of having those days.

    I’m incoherent, I need to go to bed….

     

    Just Call me Mom

    By: Heather Von St. James

    On November 21, 2005 I was not only a new mother to a 3-½ year old baby girl, but also a cancer patient. A million things were going through my mind. In particular, who was going to care for Lily?? Thankfully I come from a wonderful family and my amazing parents came to my rescue. They live some 600 miles away from us, but as soon as we asked them to come, they got in their car and drove out to be with us. My sister and brother in law also came to help and together we all made decisions as a family.

    One decision we all made together was to have Lily live with my parents in their home, while my husband Carmen and I went to Boston to figure out how to save my life. My surgery was scheduled February 2, 2006. My mom flew out to Minneapolis the week before my surgery to help us prepare, then she and Lily were going to fly to her home the same day Cameron and I flew to Boston for the next step of my crazy journey.

    The X-ray showed a liter of fluid around my lung. I was sent to see a thoracic specialist to have the fluid drained and to figure out what was causing it. The A.C.T scan showed a mass in the lower left portion of my left lung. I was immediately scheduled a biopsy for the following morning. The results showed that I had malignant pleural mesothelioma, a rare cancer caused from asbestos exposure.

    In a matter of seconds our world came crashing down around us. How could this be? We just had a baby; this was supposed to be the happiest time in our lives. How could I have a cancer diagnosis? We went from the highest of highs to the lowest of lows in a matter of months.

    We were given a few different options for treatment, the most radical being the route we chose. I was scheduled to see a Dr. David Sugarbaker, the worlds leading specialist on this disease. In order to save my life and raise my baby, Boston was the only option for us. I was a candidate for a risky, but groundbreaking surgery called an Extrapleural Pneumonectomy, which included an inter-operative heated chemotherapy.

    My surgery started at 7:30 a.m. on the 2nd, which turned into a 71/2-hour procedure that luckily had very few complications. I was in the hospital a grand total of 18 days. Everyday my husband would check my e-mail for pictures that my mom would send of Lily’s adventures with her grandparents. He would print off 5 or so photos a day in black and white, this is how I saw my baby’s 6th month of her life through grainy pictures. However, she gave me the strength and determination to get through each day. Lily was the reason I had to get home!

    I left Boston on March 2nd, one month to the day of my surgery. I lived with my parents for 2 more months because there was no way I could take care of Lily on my own. As I grew stronger and recovered Lily and I got to know each other again. She had to remember that I was mommy! Through all of this, Lily and my parents still have such an amazing bond together. I pray that this is something that last for life. Finally I was able to care for both my daughter and myself. I moved back to the Twin Cities at the beginning of May to reunite my family. I beat the unbeatable. Just call me mom.

    P.S. by Elizabeth

    I asked Heather what she attributed her successful outcome to. She answered unequivocally that the desire to see her child grow up was hugely motivating. I also was struck when reading this post by the fact that EVERYTHING went on hold in order to fight. Sometimes it’s hard to say no to everything else while saying yes to life, as loudly as it can be said, shouted even. Lily missed some months, but she got her mom.

    Thanks Heather, for an inspiring story! For more information on mesothelioma, go to mesothelioma.com.

    I have had it with greedy people preying on cancer patients. AS soon as folks suspect you’re sick, they’re ready to sell you something.

    I put in my two cents over at Everyday Health!

    Off on a mini-vacation tomorrow morning, back Monday, life is good and a week from tomorrow my boy comes home.  Can’t wait!

    It’s a good thing I’m not working until next week, because my fingers are worthless, healing from the burns I sustained on my wild wilderness adventure. I’m still high from that trip.

    Have a super duper fantabulous weekend!

     

    Not much else to say. The ups and downs of Planet Cancer.

    I’m still here, going backpacking tomorrow.

    My dear friend Susan in the hospital.

    Next week I’ll post from a mom who beat a nasty lung cancer, but today I have no heart for it. Susan’s battle pisses me off.

    Please, go join Army of Women if you haven’t yet.

    Get behind Deadline 2020 if you’re not there yet.

    Pray for another drug to use when the ones my friends are using don’t work anymore.

    Back next week on a happier note! For now I just gotta be mad.

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