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    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.

    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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    I just posted my Everyday Health blog after losing an entire post to cyberspace. AAAAAARGH!

    I did this after taking my 13 year old son Christmas shopping. He hates shopping, but he liked it when I took him to dinner. Things are a bit tight for us, as they are for so many, but “the Bubbee” (their nephew, our grandbaby) is of course going to make out like a bandit.

    Drove up to Mill Valley to see Jean. Always feel plugged in to the Main Source after I see her. 3 hours total. It’s midnight, and I’m still busy, doing stuff, glad I can do it. I guess I’m slowly getting back to my old self again, even though I’m older and creakier. I’ve heard it can take up to three years. This is my third NED Christmas, one of many more I hope and have faith.

    Here’s a sweet picture to tweak your curiosity. I’ll tell you more of the story in another post! For now, let me introduce my wonderful mom and her friend Neville.

    Now, to get my happily pooped self to sleep!
    My son is watching videos of the Annoying Orange. Yes, it is annoying. So glad I’m going to bed.

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    Someone on my IBC support list brought this amazing story to our attention.  Megan Waldbridge Nelson had seen an e-mail about IBC, which had been circulating on the internet.  It had been years ago, but she remembered, and advocated for herself.  The knowledge that she had in her mental rolodex, and her decision to act on that knowledge was lifesaving.

    This morning I spoke about IBC to a group of nursing students at my local coffee shop.  I saw a woman in scrubs, wearing a pink ribbon.  I saw my opportunity!  I thanked her for wearing the ribbon, and asked her if she had ever heard of Inflammatory Breast Cancer.  She had not, and her classmates had not either, although they had already learned about breast cancer.

    Since I became part of the internet IBC community, it is clear to me that a lot of us are committed to getting the word out, but still the majority of women I speak with have no idea about Inflammatory Breast Cancer.  Nursing students didn’t even know!  Every one of us who can speak about it are needed voices.  Megan is my hero today because she used the opportunity to make her story public, so other women can save their own lives as she has done.

    You can see her story by clicking on the link:

    http://www.9news.com/rss/article.aspx?storyid=168708

    I’m having a hard time getting the link to work!  If you are too, just go to www.9news.com and search Megan Waldman.

    For women facing IBC, the support list is a hugely important and valuable resource:

    http://www.ibcsupport.org/

    for more information and the most current research on IBC:

    ibcresearch.org

    I am alive today because of research (which gave us herceptin, relatively new when I was diagnosed), doctors who were knowledgeable about IBC, and because I took care of myself.  More and more women are speaking up to make sure that women and men know to take care of themselves.  This is not just true of IBC, but of other cancers as well.  The work is never done, but we make progress, and keep on keeping on.

    Thanks Megan.  We’ll be watching you!

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    You may have noticed my new icon to the right, the link to Army of Women. This organization is the brainchild of Avon and Dr. Susan Love, and it’s purpose is to end breast cancer by learning how it starts in the first place.

    This is a question researchers have been asking, but finding people to participate has been the main obstacle. To find out the answers, researchers need no less than an army!

    If you have never had breast cancer, you are needed. If your mother, sister, grandmother, or any other close relatives have had breast cancer, you are needed. If you are fighting it you are needed. If you are a survivor, you are needed!

    We are all needed. Women, men (yes, men!) survivors and everyone else, the research that will answer the question will take an army.

    If you join the Army of Women, you will be invited to participate in research, but are in no way obligated. Being part of the Army of Women means that you stay up to date on what’s happening in the research world. You can be part of it at whatever level you want to be.

    I’ve joined the Army of Women. I’ve joined it without hesitation, for my sister, my friends, my mom, so many women and men that I love. Most of all I joined for my beautiful 11 year old daughter, Felicia. I am imagining a world where she can grow up free of the fear of breast cancer.

    For more information, click on the purple Army of Women link on the right. Please join us! You are needed!

    One of the problems with our current, new age influenced culture is the idea that we create everything that happens to us.  If we believe that, we can un-create it, or so the wisdom goes.

    Even if you don’t necessarily believe that, a lot of folks do, and it can make it hard to be gentle on yourself.

    I have always been health concious, although I have not always done what I know to be best for myself.  I certainly pointed a finger at myself at first when I was diagnosed with Stage IIIC Inflammatory Breast Cancer.  If only I had been more consistent with exercise.  If only I had eaten more vegetables, if only I had left a stressful marriage years before, if only……

    I got over that and got committed to surviving.  I had some strong beliefs about what would work, and fortunately for me I survived.  Did I survive because of the acupuncture, the massage, the therapy, the healing touch, my health shakes, my self inquiry?  Or did I survive because Dr. Brown knew what sort of cell type I had and that she expected the cancer to respond to the big guns she fired at it?  Was my fantastic response to chemotherapy a result of my holistic East/West approach, was it luck, or the wonderful, compassionate and thorough team of doctors who treated me?  In any case I was blessed.  If I had a setback whose fault would it be?

    Nobody’s!  I repeat, nobody’s.

    I had a friend in my art and imagery support group who had faced an aggressive breast cancer.  She believed strongly in the approach she had taken.  When her cancer recurred, she was certain that she had failed.  It was hard to watch her beat herself up about it, and I was certain that her self flaggelation was not helping her body to stay strong.

    I believe very strongly that self love helps us to be strong.  Love strengthens and heals.  Whatever beast has intruded on your life, self blame will only give it power.  Self blame is a useless, counterproductive activity.  Now don’t blame yourself for indulging in self blame!  Enough already if you are doing that!

    Cancer happens.  It sucks.  Sometimes it happens again.  Cancer happening again does not mean the end.  I asked my oncologist what would happen if the cancer I beat once were to return.  Her response was that we would beat it again.  She’s a research specialist among other things, and in the cancer world new stuff is coming to light all the time.  It is true that people still die of cancer.  That does stink.  However, it is also true that more people don’t die than do on the whole.

    Setbacks can be anything.  They can be chemo effects that don’t go away as fast as you want them to.  A minor or major recurrence can be a setback.  I viewed my lymphedema, which surfaced nearly two years out, as a setback.  At first I was annoyed at myself for not being more careful.  I got over that.  It was just a setback, and now my lymphedema is very well controlled.  Hey, I’m still here!

    If you are reading this today, you are too, and that’s what matters.

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