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    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.

    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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    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…

    There’s still time to catch the show if you’re in the Bay Area! This coming weekend is the end. I’ve had a great time, and I’m glad to get my weekends and Monday nights back. All the same, I am going to enjoy every moment on stage and every blissful note I get to sing for the next four performances.

    Tom will be The Wiz one more time, on Saturday. Check out the Bay Area e.T.c. website if you want to see some really fun theater and a lot of really adorable kids!

    Tech week was insane, as it always is. Nine days in a row in the theater with late nights and life as usual. The house becomes a wreck, everybody gets cranky, and we hear songs in our heads in the middle of the night. I used to worry about the stress, the lack of sleep, forgetting my vitamins and my vegetables. Now I have come to the conclusion that having my spirit hum is every bit as good for me as some yoga or a green drink! When I sing, every cell in my body is joyful. That just has to be good for a person!

    So, on with the show, and back to normal on Monday.

    I saw my oncologist a couple of weeks ago and I feel very reassured. No causes for concern whatsoever.

    And the request on the right? I am going to D.C., and I am so stoked! My scholarship covers registration and lodging, but not meals and travel. So far I have received donations to cover half my airline ticket, for which I am so grateful! I didn’t have it to spend, but I spent it anyway because I have to go! My ticket is purchased on faith, and I still have to cover meals and other expenses. If 60 people donate $10.00 I’ll be there. Or, 120 people at $5.00. Thank you from the bottom of my heart to those who already have helped! I will report in depth on what I learn, and you can bet I’m going to use every bit of it.

    Now to organize my bizillion costumes for tomorrow!

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    I guess I’ve been resettling and regrouping. I’ve also been sick, which includes it’s own anxieties. I had a wisdom tooth infection, then a flu/cold bug that lingered, and lingered, and lingered, and now some back pain most likely from doing something stupid, but alas go wheels and cogs.

    I really am looking forward to feeling healthy again. It’s been weeks, and that’s just a bummer for anybody.

    I also took a break from all the “cancer stuff”. Sometimes it’s just so hard. I want to do everything I can to bring hope and positivity to a really rough journey, for whoever has to take it. Unfortunately I haven’t figured out how to do that and not get overwhelmed by the suffering of others. Yes, it overwhelms me. I don’t like it. Who does? Cancer sucks, yes indeed.

    I’m hoping I’ll learn more at the end of April, when I go to the conference in D.C. I’m thrilled that they awarded me a scholarship! Now I really have to go dig in, and figure out how to do that and keep myself sane and happy. This is something I really want to do.

    Recently I read “The Emperor of All Maladies”. I was deeply touched by the story of herceptin, and the obstacles that came up to getting it into mainstream medicine where it could save the lives of people like me. There was a woman, waiting on the edge of life, begging to be given the new drug. Genentech would not release it because all clinical trials had not been completed. The woman died.

    On the day of her death, activists, survivors, and patients drove their vehicles in an outraged demonstration onto the grounds of Genentech, over the lawns, through the parking lots, honking their horns and and waving signs in an uproar of protest.

    More compassionate and timely studies have emerged since then. That woman did not have the power to fight alone. Because of the rest who did, many like me are still here.

    My goal in the next few weeks is to actively and deliberately, with much inward work and outward resources, find a way to be a cancer warrior without having my life identified by cancer. I need to find a way to have days and maybe even weeks that I don’t think about it, because that is healthy survivorship. I need to pick the brains of other women I admire who manage to continue their healthy and happy survivorship and be the rocks that they are for others who suffer.

    So, onward, back to life, back to rehearsals. The Wiz is opening on March 25! It’s going to be a great show. I’m in all of them, since I’m not doublecast, but to see my husband rock as The Wiz, check out the Silver Slippers Cast! Tickets are available at www.bayareaetc.org.

    Hope to see you there!

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    I was tossing around, wondering what was going to happen on February 16. It had been nearly two weeks since I noticed the small, pink rash on my breast. Now the whole breast was red. My left arm ached constantly.

    I knew that tomorrow I would know. I would know if I should be really scared or not. I knew that most probably I would only know that much, and would have to endure several long days (it was the Friday before a three day weekend) before I really knew what I was up against.

    I hoped and prayed that it was nothing, while deep in my gut I knew something was terribly wrong.

    Four years ago tonight there was still a possibility of no odyssey into Planet Cancer. I still hoped, I still dared.

    The next day, I gave a massage on the second floor, walked upstairs to the Women’s Center on the third floor, and nothing would ever be the same again.

    Not the same. But after it all, it’s good. It’s good and it still is, and I am still here. God is good.

    Going to go have a peaceful sleep and give thanks.

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    After I posted last night, I thought hard about it and then looked up heat rash.

    This morning it was better. If it was skin mets my calendula cream would do nothing for it! All appears to be well, and I am again so grateful. I never take anything for granted anymore, or try not to! Sometimes I slip and start to forget just how precious my life is to me. Then another little scare puts it all into perspective.

    We all get scared sometimes. It felt good last night to write about it. In fact, the last phrase came out with a simultaneous sigh of comfort. Sometimes just acknowledging what’s so makes it less so. Strange how that works.

    I remember one day during chemo, not quite three years ago. It was my third Adriamycin/Cytoxan infusion. It was the weekend. I had chemo on Wednesdays, and Fridays were usually the worst days. Saturdays were a little less bad, and by Sunday I was breathing a sigh of relief that another one was done.

    This particular Saturday, I was at my boyfriend’s house. This became our pattern on chemo weekends. I’d just hang there, he’d take care of me, and we did mellow things. On the alternate weekends we both had our kids, and the four of them got along famously. We did mostly normal things (me less vigorously, but we still did) and that helped me remember what normal felt like. I tried to take a nap on this particularly miserable Saturday, and just couldn’t get comfortable. I was overwhelmed by my multiple discomforts. They were more than the sum of their parts. Finally I gave up and came out into the kitchen, where my boyfriend was busy just doing his household things.

    I looked at him and started to cry. He was a real trooper that day. He dropped what he was doing and listened to me. I complained that my stomach was queasy, everything hurt, I was desperate to sleep and every time I started to drift I had to pee, because that wretched red devil Adriamycin is a bladder irritant. I spilled it all. I whined. I expressed how tired of it I was and I still had five more to go. He just listened. After I dumped it all out and looked at it, I picked myself up, went back to the bed and went to sleep for awhile. I felt better when I got up later.

    Last night when I was in a panic the thought occurred to me to just say it. Just look at it, tell the truth about it, and sit with that. Yes, I was spooked. Yes, this is part of survivorship. After I freaked, then I could face what was scaring me and look at it closely. I found some pictures of heat rash and it sure looked like that to me!

    I went to bed last night just as chipper as I could be.

    After that awful 3rd A/C infusion, it was not until the following Wednesday morning that I felt human again. Did I mention that I had a sinus infection as well? That the A/C had a nice antibiotic piggyback on top of it? That my head felt like it was going to blow up? What I remember most was the sheer joy of waking up on a spring morning and feeling good. I was so happy I just wandered around the apartment singing at the top of my lungs for happiness. I must have kept it up for at least an hour. Mozart, Faure, Puccini, smatterings of my favorite operas and show tunes, reveling in the high notes, drawing in great breaths of life.

    I feel a little bit like that today.

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    I have a rash on my chest.

    I think I remember feeling it there after a day of rehearsing, sometime last week. Dancing and sweating, dripping down my chest, noticing little bumps there later and not thinking much about it. It’s been a few days.

    More sweat today, three hours of dancing. Took a bath. Rash looks kind of nasty and itches. Thinking….

    Oh shit. This could be skin metastases.

    I looked up some pictures. I looked closely. Yes, it could be that, but again it might not be. If it is, it’s early. Now that I’m aware of it, it seems itchier and redder.

    My oncologist is away until Tuesday, my mom (my rock) is out of town. I called my husband in to look at the pictures and then look at my rash. He told me it looked like a sweat rash to him but that I should get it checked out right away.

    So, a call to the oncology office tomorrow, and I will see someone else if not Dr. Canales. In the meantime, I’ve put Calendula lotion on it and I’m going to sleep tonight and hope for the best.

    Fear of recurrence is a big deal for us IBC-ers (as we call ourselves I’ve noticed). It’s nearly four years out for me, so I have been holding on to the statistics in my favor, that say that most recurrences of IBC occur between the first 2-3 years. I read on one website that if nothing turns up by five years then it’s probable that we’re cured.

    So, in addition to the yoga I do to minimize aches scaring me, and the neck stretches and acupressure I do to keep headaches from scaring me, if I’m lucky and this is just a sweat rash, I’ll add baby powder to my arsenal of things to keep other things from scaring me!

    This first five years is so hard….

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    We lost one on the list today. One of my IBC sisters could not stop the relentless forward march of this stinkin’ lousy disease. No matter what was thrown at the beast, it just kept on keepin’ on until it’s host could fight no more. Stupid parasite.

    My last blog on Everyday Health generated comments from two survivors, one of 12 years, and one of five years. The five year survivor had story similar to what I posted yesterday. Still here, backwards treatment and all!

    We need to know you’re out there, survivors!

    Here’s the post over there at Everyday Health.

    I had a great day today. I gave a massage, did theater with some kids, and then went to the childrens hospital. Now my husband and my son are bugging me to get off the computer and go watch “V” with them. Life is good.

    Everybody deserved a life that makes her as happy as mine does me. Let’s make it happen by 2020.

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