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    From the monthly archives: August 2011

    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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    I truly can’t wait until next Wednesday…

    I have one foot in the school routine and the other in the last gasps of summer, and I say enough aready…

    My son started high school last week. So far, so good! My daughter starts the seventh grade next Wednesday, and at this point if I try to hold her to a sane schedule she accuses me of ruining her summer. Ah, the drama! No wonder we do theater together.

    What I want desperately is some sleep, and next week I shall have it.

    I have had a lot of ambition for these last few days, and have fallen miserably short of everything I wanted to get accomplished before Fall hits full swing. I am going to be busier this fall than I have been to date since I finished cancer treatment over four years ago. I am wondering if I will be able to keep it up, grateful for the chance. I am working more at the children’s hospital, the drama club will be resuming, and I have another part time job visiting elderly folks who need a bit of sunshine (this doesn’t feel like work at all). I also am determined to be a super organized mom (there’s a stretch) and may be in the next musical, not sure yet. My mom would caution me against trying to do too much.

    I kind of think “too much” depends on what the too much is. Is it something that drains me or feeds me?

    Am I excited about it?

    Can I recover my momentum if I have one of those crazy no sleep nights? What’s my recovery plan if I get too insanely overwhelmed? Will I miss out if I don’t do these things?

    Are my eyes too big for my stomach, as the saying goes?

    Better to stretch than to shrink, and I can handle it. My backpacking trip restored my confidence in my ability to take some lumps, so here goes. My kids are transitioning, and so am I.

    And, that iconic five year anniversary looms in the near future. I am almost superstitiously afraid and also contemplating a deep sigh of relief. Five years is not a promise, but it makes things look better and better.

    My daughter is at her dad’s tonight, and I am going to bed early!

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    Everyone seems to think I have such a positive attitude…

    Mom, care to comment? Spouse? Children?

    After being told that I am alive because I have “such a great attitude”, I had to vent a bit. I’m all for it, but in the long run, attitude is not everything!

    Here’s my view of what constitutes a positive attitude!

    Onward to endless mom chores…

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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….

     

    I’ve had a few of those this month, but tomorrow is the one I’ve really been looking forward to. My boy, who has been away all summer at wilderness camp, is coming home. We are going to fetch him tomorrow. We fly to Portland, then travel to Albany, spend the night and get the boy on Friday. I’ve missed my teenager. I’ve really missed him.

    Then, the train home. I absolutely love the train, love it like a crazy train-traveling fool. I’d rather train than cruise, fly or anything else. Watching the world go by, being rocked to sleep as we travel through the mountains, eating in the dining car, I love it all. Tom and I will get to enjoy our boy for a leisurely 16 hours before we’re back into the city life. The poor kid starts high school in two days. I think he’ll probably go crazy for trees. The train will be his pause that refreshes, as well as mine. His sister will see him when he gets home. It is a bit unfortunate that she will be turning 12 on the same day he is done with camp, alas. Oh well, she gets two great parties, not bad for a tween!

    Lately a lot of things to write about are floating around in my head. Many of them have nothing to do with cancer. This site is a resource site first, and I have been floundering around now for nearly a year trying to figure out how to make it one. My sojourn at Camp Medicine Wheel brought some clarity to this vision, and I am actually eager for summer to end and the regular routine to begin so I can seriously get to work. All the same, if it were not for being committed to advocacy and hope, I could really forget about cancer most days. I am beginning to separate it from myself, as I identify more with being a mom, being a massage therapist, being a teacher, artist and writer, being someone who really, really enjoys my life.

    The thing is, for me I can be all that and in the back of my mind and spirit is the awareness that it can change. For so many it does. I don’t dwell on it, but I know it. Even if it were not so, the exhaustion of my days in treatment, the shock of my diagnosis, the monstrous game of chicken that was the battle between the treatments and the cancer, all of that is something that no one should go through alone, ever.

    So, my posts will likely change for now. Sometimes I will forget all about cancer. That’s a relief.
    Sometimes I won’t. There are too many people I care about who are dealing with it. Even if I want to forget about it, it’s in my face.

    But the rest of the site, the part that is not the blog? Never.

    And, I have to think that normalcy in itself is a fabulous message. I know that when I was bald and sick, normalcy was the hope I was holding onto as I pushed through.

    I’ll never take normal for granted again!

    P.S., just posted at Everyday Health about the healing power of the wilderness. I’m so appreciating that today!

     

    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!

     

    Fragile, Handle with Care, NOT!

    What a glorious thing to go backpacking and discover that the post-cancer me is not as fragile and weak as I thought! I guess it’s the fond memories of my childhood that translates into the satisfaction of “being a trooper”, which was my Dad’s way of describing someone who rolls with the punches. Do you remember getting so grubby and scraped up that it took a long shower and lots of scrubbing to determine what was dirt and what was scrapes and bruises? The delicious feeling of a well earned sunburn that brings to mind a satisfying day outside? Maybe I’m nuts, but the feeling of being a little beat up but happy makes me feel sturdy and alive.

    I met my dear friend Susan at her home on Friday, and we were immediately derailed by a late bus (to bring my godson Victor home). Nothing daunted, we drove to fetch him on the way. We were quite delayed then getting to our destination, but we were determined to get up into the mountains that very night, dark or no. Fortunately Susan’s brother Frank, nephew Ben, and another friend (new brother) Paul were already there.

    I had some trepidation about this trip. What if… what if….. what if I overwork my chemo-d heart? What if my arm swells up? What if we get lost? What if my brainfog makes me forget something important? Blah blah blah, off my brain went, but my tendency to blast forward no matter what won out, and I’m so glad.

    When I put the backpack on, I was oh, so discouraged. I was out of breath within the first 10 yards, no kidding. The straps cut into my shoulders. My heart was racing. I needed the trek pole that Susan had provided. We were at 6,500 feet, and I was not ready.

    Nonetheless, I know the only way out is through, so one foot in front of the other with frequent rests ultimately got us there. And was it ever worth it! The trek there was beautiful. It was only 3 miles, not too tough terrain, only a couple of hills, so for all my woes it was manageable.

    We spent Friday and Saturday night there. We had one whole day of nothing at all, just hanging out, visiting, exploring the magic of the place. Susan calls it Camp Medicine Wheel because there is a mountain at the compass points to the West, North and East. We entered camp roughly from the south. We camped next to a river, which lulled us to sleep each night. On Saturday, a thunder storm surrounded us on three sides, while the sky above us remained clear. It was nothing less than heaven.

    I did make a couple of relevant discoveries for cancer survivors who backpack. I was diligent about my “Alaska perfume” (bug spray), but my left arm was covered by a sleeve all of the time so I didn’t spray it. When I went to bed, I took the sleeve off. Alas, forgot to spray! After that, my friends called me Lumpy.

    It was so gratifying to hike back to the trail head with plenty of energy, having become accustomed to the altitude (and having eaten a lot of the food we carried up!), with a chipped tooth, lumpy arm, burns on both hands, lots of sunburn and bruises, and an ear-to-ear grin. No, not fragile. What a relief!

    Sunday ended perfectly, with a stop in Angel’s Camp to look at rocks (there’s an unbelievable store there) and a chance to drum. We actually stumbled upon a weekly open drum circle.

    I wonder if other survivors doubt their resilience after being beat up by cancer and the treatments we have to take to conquer it. Anybody? What about folks still in treatment?

    I know that when I was on chemotherapy it felt good to push myself a little, to walk to my radiation treatments, to do yoga, to find the edge. I had just forgotten. This weekend was a much needed, very therapeutic reminder.

    Planning the next one….

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