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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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    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.

    It’s a good line though, and sort of true!

    But mixed in with the gardening for sanity is the hard work for my family’s benefit, and supporting a friend through her cancer treatment. She was diagnosed in June and was not insured. I just posted about what insurance gets you at my blog at Everyday Health.

    My boy has been away at wilderness camp, and being a champ. We’ve had quite a lot going on around here.

    Life gets fast, and it has been, very much indeed. I got my wish. Some days I don’t think about cancer at all, or wouldn’t if I didn’t have so many wonderful friends on the blogosphere to keep track of.

    Tomorrow I am headed out backpacking with my dear friend Susan, her brother, another friend I haven’t met yet, and my Godson.

    Now I’m gone fishin’!

     

    Wow, has it really been over a month since I posted?!!! I’m shocked!

    I guess I hit the pause button for awhile. I’m actually full throttle into rebooting my family system. (Really!) I just posted over at Everyday Health about how cancer has affected my family. We are still dealing with it. My son is away at a Wilderness Therapy Camp, and we are engaged in doing everything we can to make sure that the courageous work he is doing up there in the Oregon desert is going to stick.

    So, I’ve been in Mom mode, guiltily ignoring all the goings-on in the cancer world, to focus on my family. There is a lot going on, lots that I have something to say about. I write long posts in snippets in my head. But alas, there is only one of me, so I have to focus on one thing at a time.

    One of my online buddies that I’ve never met has posted about this. I have had it up to my eyeballs with chemo-brain. I am trying to do my Mom thing, do my work, focus on my family, get things done. My family has been deeply affected by Mom fighting for her life in 2007. I am always grateful, every day, that I survived, and am still surviving.

    I’m not the same, and sometimes that really pisses me off.

    This last weekend I made a mistake at one of my jobs. I wasn’t on top of my game. In the past, I was known as someone who was pretty sharp, had it together. I could hold several big pictures in my mind at once, and fish in my brain for the vast databank of details. A boyfriend of mine used to call me “computerbrain” with great respect. No more.

    I lose details. I don’t remember routines that are new. My hands know how to do the things I’ve done for years, but yesterday’s instructions get lost in the muck. I make many more mistakes than I used to. I affirm to myself that I never make the same mistake twice, and mostly that’s true. When I discover that my overloaded hard drive missed something, I create a system externally (like a list, or an alarm on my phone) to make sure I don’t repeat an error. Unfortunately I make errors. Lots of them. This is not like me and I’m struggling with that.

    Other people really don’t get it. If I joke about having a mind like a sieve, I’ve heard, “I never had chemotherapy and my brain is like that too”. (Quitcher bitchin’, you’re just a ditz…)…

    It’s not the same. It’s frustrating. Other people think I’m a flake. One of my colleagues thought it would be great to make an example of me, so I can feel real bad.

    Cancer is the gift that keeps on giving. After you survive it, the treatments you had can give you a new one. Your brain may never recover. Your children grow up before they are supposed to. I feel guilty bitching about it, because I’m alive, which is more than many of my fallen sisters and brothers can say.

    It’s not black and white today, it’s gray. I can rejoice that I live, and mourn what I have lost. It’s gone, never to return, and that’s just the way it is. My left arm will not be strong again, my brain will not be sharp again, although both can work very well under the right circumstances.

    Tuesday evening I will get on a train and go to Albany Oregon, where I will see my son for the first time in three and a half weeks. He has been in the high desert with three therapists and five other boys. He has cooked for himself, made his own shelter, and explored his hurts bravely. I can’t wait to see him. I am so proud of him.

    And while I am feeling guilty for dropping out, I notice that my community is still here, the community of people determined to live well after and in spite of cancer, to help others to do it. I love to see my friend’s comments here. I have a guest post coming, waiting for me to catch up with myself and share another perspective. I’m honored that another cancer warrior wanted to offer her story on these pages. One more inspiring story, coming up!

    None of us are alone. If the rest of my world doesn’t understand chemo brain, at least my cancer warrior sisters do. Yes, they do.

    Onward…

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