Today

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Today would have been my due date. October 17th, 2013. I was supposed to be getting ready to give birth to our first child today. Instead, about 7 months ago I had a miscarriage and now I am in the midst of a (hopefully) life-saving cancer treatment. For how long this could save my life, nobody can tell me. I am the epitome of not knowing where life will ever take you.

All I have ever wanted, since I was a little girl, was to be a wife and a mother. As the years blew on and I grew older of course I had other aspirations as well: To go to graduate school and become a social worker, to travel to exotic places, to publish a book (still working on that one), but underneath it all, what I really hoped was to have a family. In this day and age maybe it’s not the politically correct thing to say that more than a career or money or independence or any of those other things, I’d rather be a wife and a mother. But it’s the truth.

I knew this about myself at a very young age, that it would be the most important thing that I would ever do: Take care of and be committed to others. Create and nurture a family. I always felt as though I had a tremendous amount of love to give, and I couldn’t wait to find a partner to give it to, and then have children for us to both give our love to. I didn’t mind thinking that my identity would be wrapped up in anybody else’s; in fact, it appealed to me more than it didn’t. When I was first diagnosed with cancer about 8 years ago, I remember thinking: Will I ever get married? Have kids? Go to Africa? Publish a book? I have done 2 out of those 4 things since then. My husband and I had an amazing time on our safari honeymoon.

The pain that I am now faced with is that I will never get pregnant again. The doctors can’t promise that the liver melanoma wouldn’t spread to the baby. It took us over a year of trying and doing various treatments at a fertility clinic to get pregnant, but I am so glad that I was pregnant once, if only for a few weeks. Too soon to have any symptoms or feel the baby inside of me, of course, but still, it was there.

The truth is, SHL and I don’t know yet if we will ever have a family. Perhaps most think that the question of children would be a no-brainer, that it wouldn’t be in our life plan anymore, but that is for us to decide, and nobody else. A lot of it depends upon how well this treatment works, and what the prognosis looks like for a long life where I can manage this as a chronic disease. But we just don’t know any of that right now, and we won’t know until I finish my treatments, and get scanned. Others move on, get pregnant, raise their families, spend their time complaining about the lack of sleep or money drained, or their kid’s toothaches or botched Halloween costumes, and I long for those complaints. I long to have a “normal” life, with all of the things that I ever dreamed about. Others get to have these things. Why can’t I?

There is no answer, I know that. No booming voice from the sky that will tell me why this has happened, why I must suffer watching others live out their dreams, why I must wait to see if mine will ever be able to move from my heart into the here and now. There are no answers. Only pain. My inner ally is telling me to make peace with the unknown, with having no choice but to live in the present moment. Because with the unknown comes such fear, yes, but also perhaps some wonderful surprises may come from it as well. That is what I am hoping.

Today SHL and I should have begun our family. But he is my family, and no matter what happens, he always will be.

Happy tears, next time

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“Stop whining, and add a fruit.”  ~ Kris Carr

It has been over 2 weeks now since I have returned from the Hay House conference that I attended with Marla entitled, “I Can Do It!” in D.C.  I had accidentally stumbled upon the event on Kris Carr’s website, as she was one of the speakers, and given that Marla is more knowledgable about “personal growth”, I sent her the link with a note that said, “Is this legit?”  To which she quickly replied back, “YES!”  It was soon thereafter that we decided, instead of a girl’s vacation which we try and take yearly (though some years it’s been tougher than others due to work and schedules), we would meet in D.C. for the weekend and soak up some life inspiration.  

Now I know what you some of you may be thinking:  With a title like that, it’s got to be pretty hokey, right?  A bunch of touchy-feely people sitting around talking about their emotions, crying at the drop of a hat? Swaying to silent music and chanting “I Can Do It!”  Well, there was no silent music or chanting, but there were a lot of people there who were introspective, interesting, self-aware, and open. The focus of the weekend was on personal growth, positivity, purpose, relationships, good health and love.  It was an interesting mix of people; one woman had 2 “therapy bunnies” with her in a stroller named William and Shakespeare (I kid you not).  There were a few men here and there, but it was mostly women of all ages.  And the vibe throughout the whole weekend was that everybody who was there understood that there is something very powerful and enlightening about a) positive and inspirational (true) stories (one speaker/author was close to death from cancer, fell into a coma, had a near death experience, regained consciousness, and a few weeks later was cancer free) and b) learning about and connecting with your purpose (which doesn’t necessarily mean “I want to be an astronaut one day.” It can be just getting to know yourself, and then living an authentic life).  Who among us is so arrogant as to say that we are perfect, that we have all it figured out?   Can any of us really say that everything that we have ever imagined has come true?  That we know and understand the difference between your archetype and mine?  How the meaning of resilience has changed over the years?  

Out of all of the inspirational and motivational speakers that weekend (and there were many, probably about 15), by far my favorite– of course– was Kris Carr.  She was real, warm, kind, funny, relatable, and just the person to help me see outside of the “cancer box.” In her hour-long talk, she reminded me not to miss “those” moments; the special ones that are harder to see through the fog of cancer.  She taught me that what we can control is what we eat, drink, and think.  She gave me the gift of understanding that taking care of myself is not selfish, it’s loving.   

I was in a trance for that hour, listening to this survivor of a stage 4 cancer speak from the heart, and so wisely, so grounded. (The doctors gave her about 10 years to live with what they hoped would be a slow-growing and not aggressive cancer, and that was 10.5 years ago, and thank g-d, her tumors have now shrunk!). When Mar and I got in line to have our Crazy Sexy Cancer Tips book signed, my knees started to buckle as the line moved forward, and I got closer to her. By the time it was my turn, salty tears were pouring down my cheeks, and I could barely get my words out (embarrassed!). “Are those happy tears, I hope?” Kris asked me, as I put my book on the table in between the two of us. “No,” I sobbed, “I was just, hiccup, diagnosed with a, hiccup, stage 4 cancer, hiccup.” She gently took my hands in hers and whispered, “It’s terrifying at first, but it does get easier, I promise.” I nodded. By this point I was crying harder than I had since the doctor had first diagnosed me, and I couldn’t stop. She came around the table and hugged me, whispered into my ear. She signed my book “To Samantha, Peace, Love, and Veggies, Kris” with a heart, and then looked me in the eyes and said, “The next time that we meet, sweetheart, those will be happy tears.” It was all that I could do to nod again, and whisper “thank you.” What I really wanted was to grab her and ask her if it would really be OK; somehow I knew that whatever she said, I would believe. I wanted to have hours and hours alone with her, to talk about everything: The diagnosis, the treatment (there has never been any conventional treatments for her kind of cancer), the doctors (we both get our care at Dana Farber), the holistic side of it, the nutritional side of it, how to write a book, how to talk to my friends about the cancer, how to talk to my family about the cancer, how to support my husband (she married her Crazy Sexy Cancer documentary director/editor back in 2006), and how to find some way to get kale down when you can’t stand the taste of it (Does the lemon juice, apple, cucumber and celery really help to mask the kale taste in a smoothie?). But alas, after a quick picture (in which we were hustled by an event director, as pictures weren’t really allowed), there were hundreds of other people probably waiting to ask her the same questions, and so I stepped aside and fell into Marla’s arms, weeping for my life b.c. (before cancer), and letting myself finally feel what I had been scared to release since the day I was diagnosed. Sam and Kris Carr in D.C.

When I returned home, I began thinking about where Kris is now in her life, 10.5 years after her diagnosis. She has made a documentary and written books and cookbooks. She has a website, a following, and speaks all over the country. She quit her job after being diagnosed and ultimately married, bought a farm, and adopted a dog with her husband. Her life now seems to have great purpose, but I wonder about the months following the diagnosis, if she felt as lost as I do (my bet would be on yes). I wonder if I have anything of value to give to anybody else, the way that she has given value to me. I wonder if the gray will ever fade, if things will ever feel real again. I wonder when I will get to be with Kris Carr next, and if I will have figured out anything by then. I wonder if indeed my tears will ever be happy.

Sam and Mar at conference

Sam and Mar with name tags in D.C.

See a Cure

Sam in D.C.

The English Muffin Dance

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A couple of weeks ago SHL and I went to our new grocery store, in our new town. It was before I was feeling sick from the treatment, and we were excited to stock up our lovely kitchen (a huge upgrade from our small apartment kitchen). It was a beautiful early autumn Saturday, and we had just gone out to lunch, taken a quick spin around Whole Foods for some organics, and then played tennis. I think I remember the day in such vivid detail (I had the cobb salad and need to work on my backhand) because it was the last Saturday that I felt like myself.

As we wandered up and down the aisles of our new grocery store, thoughts of cancer washed in and out; in when I thought about the healthy foods that I wanted to buy, and out when we would start to talk about something else– whatever it was, it generally took my mind off of the cancer. So much so that at one point I shimmied my way up to the multigrain english muffins and, completely forgetting where I was, started to do a little dance (think of the twist in the 60’s). SHL looked at me like I was nuts, then burst into laughter, which quickly caught on once I realized what I had just done, and soon we were both in tears, hysterical from that crazy silly little move– in the middle of the bread aisle. Was I really that excited about the english muffins? Of course not. Looking back on it, I think that I was tapping into the “Real Sam,” the girl who SHL finds singing made-up songs while brushing her teeth, talking to the cats as if they understand everything that she’s saying, and prancing around the house in sweats as if she’s wearing a ball gown. It was as if, in that moment, I was back to being me, before the cancer. Silly. Fun-loving. Real. Not caring about what others thought; because if they thought that I was crazy, then clearly they’d never had an english-muffin-dance-moment and maybe they just weren’t enjoying life as much as they should.

I didn’t think about it until weeks later, 2 treatments down and sick to go, when it occurred to me that I no longer feel like myself, and that thought both scares and depresses me. It’s enough to have these foreign lesions uninvited in my body, but to then feel like I can’t even sort through the cobwebs that streak their way across my mind, well it’s all about the cancer now. I walk around in a daze, occasionally snapped out of it at work with a tough phone call. I wonder about the word hope, and where it fits into my life. In reality, what has struck me is that others continue to live out their glorious dreams, while my glorious dreams remain as sacred as the day they were born, but in my heart, and nowhere else. And I wonder if I will ever feel like doing the english muffin dance, ever again.

Who will I be now?

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“Another 3.5 hours to go,” I thought to myself, staring at the clock on my desk at work, waiting and hoping for each slow minute to go by without an interruption by the phone, a co-worker, or my boss.  All I wanted was to be left alone; a tall order when you work in an office, and your job is to be available via the phone for people who need things.  (The phone literally rang as I wrote this; perhaps bad reception?  Nobody is there, and my rule now, as my patience wears thin, is to say hello twice, and if nobody responds, then I hang up).

 I am bitter that I have to be here today.  Bitter that I need health insurance (though everybody does).  Bitter that other people are complaining to me about their problems, when I can barely get a plain bagel down because of side-effects from the cancer treatment.  I am so lucky that I have health insurance, and that insurance covers my treatment.  I am so lucky that I have a job. I know these things.  But today, I just can’t seem to stomach any of it (let alone the bagel), and I wonder if I let myself go to the depths of despair, if people will still want to read my words.  “You’re in the trenches with me,” I think, as I write this post. I wonder if something bad (even worse) will happen to me because I have complained. At some point, I’ve got to be positive, I tell myself.  And I know this to be true, not just for my readers, but for myself.  But even Kris Carr (who I’ll be quoting a lot in this blog) says that it’s OK to have a couple of days where you feel crummy; the “3-day rule,” she calls it. After 3 days, it’s time to get out of those sweats, and get back into the game.  I’ll count today as Day 1.

 Yesterday was a treatment day.  SHL and I got couples massages in the morning for our anniversary, before we headed to the hospital.  It was a strange day.  Never in a million years would I have thought exactly 3 years earlier, on my blissful wedding day, that on our 3rd wedding anniversary we’d be spending it at the Dana Farber Cancer Institute.  We enjoyed the massages, but I think that we were both preoccupied with cancer.

 At the end of the 8 hours, which includes travel time, blood work and an IV, a million questions and an exam by the physician assistant, a break while they mix up the medicine (in which I picked at some plain grilled chicken and pita bread, as much as I could tolerate), and then the actual infusion, I was exhausted.  Team Lozier kept me busy reading me funny stories and doing crossword puzzles together.  But by the time I walked into the door of my house at 8:00 last night, I could barely stand, let alone try to eat anything.  It wasn’t as if I was running a marathon, a lot of the day is sitting down and waiting, but of course it’s the emotional stress that takes a toll.  I dread getting the IV put in (I advocated for myself to get the smallest needle possible and they called my nurse who said that was fine, but they still can’t put in the crease of your arm, so it often goes in the hand and it hurts!), and of meeting w/ the PA and thinking “one wrong move on my part and they may not let me continue with the treatment,” and so by the end of treatment day, I feel as if I haven’t slept in days.

 What’s ridiculous is that I’m on intermittent FMLA, but I’m hesitant to use it.  I’m scared of what will happen if I use up the 480 hours.  (Short-term disability?  Will I lose my job?  And most importantly:  What will people think?  Shouldn’t I be strong enough to handle 4 doses of an immuno-therapy drug?  Some people’s treatments are much more intensive).  My Mom told me recently that even as a little kid, if I was sick and had to stay home from school, I’d feel guilty, like I was missing something, or letting somebody down. This hasn’t changed.  So now I push myself to go to work, even though what I’d love nothing more is to go home and take a nap, or read a book on our comfy new couch.  It feels ridiculous to be so worried about what other people think; the second that you’re diagnosed with cancer, doesn’t all that go out the window?  I guess I prove that it doesn’t.  

 I remember the first time I had cancer.  I took a couple of days off to get 2nd opinions after I was diagnosed, and then chose my treatment option.  I then had to take a week off of work to have a surgery where they put metal rings into my eye, and then recover at home with medicine.  The following week, I returned to work with an eye patch over my left eye, which looking back was a brave thing to do, considering that I worked in a school and kids can be mean (thankfully the kids were great, and making pirate noises to the little ones seemed to discourage them from being scared of me.  There was however an incident on a city bus where a little kid cowered behind his Mom when he saw me.  Are eye patches really that scary?).  The week after that I took off for my proton beam therapy treatment, and then I returned to work. It wasn’t until that summer that I finally slowed down, took myself to Italy, and really processed what those months were like for me.
 Proton Beam Therapy at MEEI January 2006, at the Mass Eye and Ear Infirmary, receiving the proton beam therapy.

Steve, Sam, and Bob during treatment These two men, Steve and Bob, were going through treatment at the same time that I was. We bonded.

 

 There was no sitting on the couch feeling sorry for myself (that I remember, anyway, perhaps my friends would tell a different tale), there were no sick days, just work, and back to a routine. Soon after treatment I flew to Last Vegas for my best friend’s bachelorette party, and then celebrated my 29th birthday.   But I always felt a little different after having that cancer experience; like I would never completely be the Sam that I was before I was diagnosed (how can you be when you face your mortality at the age of 28?).  And I wonder who I will be now.  I hope she’s somebody stronger, wiser, more adventurous and more carefree.  I hope that she has more self-love for herself, hope that she treats herself to naps and books and cupcakes (even if they’re organic) without guilt.  I hope that she tries new things, take risks, stops taking bullshit from other people, lives without caring too much what others think. I hope that when others upset or disappoint, she doesn’t look within herself to find blame. I hope that she dreams big and enjoys the little everyday stuff, like the way the light looks different through the autumn trees every day now as we get closer to winter. I hope that, this time, she comes out as strong as she did the last time.

KACP

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By now a lot of you know that I have already begun what I like to call my KACP (Kick-Ass Cancer Plan).  It was through multiple conversations with my doctors, nurses, and clinical research specialists that I chose my KACP.  There were a lot of questions, and a lot of research that needed to be done (compliments of my Mom and Dad, who are amazingly bright and very good at figuring out how to decipher the technical medical jargon; plus the fact that SHL and I had just moved into our very first house, and we were both trying to process the diagnosis.  I don’t think that either of us was up for doing this kind of intensive research).  There were consultations with medical professionals outside of Dana Farber as well, and by the time I went in to see my oncologist and get my last round of questions answered, I felt really good with what I had decided.  And the hug by my doctor just sealed the deal.

So on Wednesday, September 11th, I got my first dose of an FDA-approved immuno-therapy drug (most people want to know if I’m on chemo; I’m not.  They’ve found that chemo doesn’t work for my kind of cancer).  I brought w/ me my KACP-Team, and they dropped me off at a yoga class and went to get some coffee, while I tried to get centered.  Note to self:  Trying to feel grounded in a well-lit fluorescent room with strangers while maneuvering parts of your body that you haven’t used in months is not exactly a recipe for calmness.  (Oh well, at least I tried).  We then went upstairs to sign some consent forms (I agreed to let them use my blood for research; if I can hopefully help myself and others, then why would I say no to that?), and then went for the blood work.  I wasn’t expecting this to be the hardest part, but when they had to stick my arm under warm water to find a good vein, I realized this may hurt more than I had imagined.  And while I’m very used to needles from all of my health issues throughout the years (and from trips to the fertilty doctor sometimes on a weekly basis for blood work), when you wind up with a big purple and yellow bruise on the side of your arm, you realize that there really is no “getting used to” pain.  They put the IV in me that I would need for treatment, and back up the elevator we went to let the infusion team know that I was there.  They needed an hour to mix up the medicine (they won’t do it before you get there because it’s so expensive), so we went back down to the cafeteria where I carefully picked out a veggie sandwich to give me the energy that I needed to get through this.  When I was finally ready for my infusion, they sat me in a big chair that leaned back, gave me a warm blanket, and away we went.  My nurse Nancy came in to go over all of the side effects with us (some of which can be deadly if not treated right away), and I was impressed at how thorough they are:  They even give you a wallet card which explains the possible side effects and which, should you ever g-d forbid have to go to the ER, you can give to the doctor so that they’ll understand exactly what kind of treatment you’re getting, with the pager number of your doctor.  The social worker stopped by (turns out she graduated from U of Miami 2 years after me, we subsequently found out), and just the mention of a “support group” made me cringe. No thanks; I’m not up for sitting around a room with a bunch of people crying, thank you very much (the truth: I’m not up for sitting in a room with a bunch of people, some of for whom treatment may not be working, g-d forbid), and then it was up to my team to keep me laughing and distracted (which they did) for the remainder of the hour and a half infusion.

Team Lozier<p

I'll be doing this every 3 weeks, for a total of 4 doses; then they'll wait a few weeks and scan me to see just how much ass I'm kicking.(When I think about the scan I actually want to vomit). Staying Positive

I've been wanting to work on my mindfulness and visualizations lately as well, but I feel so scattered that it's difficult. When I do sit down to meditate I honestly can't quite get my mind to where I'd like it to be, but I try not to judge, and instead accept that this is where I am right now (thoughts splattered onto a canvas, like a Jackson Pollack). I'm trying to learn to be kinder to myself, to unlearn years of effortlessly beating myself up for this or that (why do we this? Would we ever say half the things to our best friends that we say to ourselves? I think not). There is a lot of importance placed on positive thinking when you're going through cancer treatment, so on the days when I'm not negative, but too scattered to even be positive, I worry that somehow those missed days of positivity will affect my health. It's hard working on all of these things at once; trying to be gentle with myself, unlearning negative behavior, observing without judgement, and accepting that if I have days where I don't get to my meditation or visualizations, I'm still doing good things for my mind and my body (going to work, emailing with friends, taking a walk, blogging, starting a cancer scrapbook, petting my kitties, decorating our new house, watching my favorite shows with SHL). It's a process, I suppose, and one that I'm eager to get "just right." Like a cancer perfectionist.

Tomorrow is my 2nd dose of treatment, and I'm grateful that I can receive it, because the side effects from the 1st dose have not been pretty (they could be worse, but so could pretty much everything). And if they turn into something more concerning, then there is the potential that they would be too scared to let me continue on it. So I've been on this "brat" diet for about 2 weeks now (bananas, rice, applesauce, and toast) and I’m sure that I’m turning into a brat because I’m so starving! I miss salad, chicken, cheese, hummus, soda (which I'm not drinking any more, brat diet or not), coffee and chocolate. My friends came over last week and brought me plain pasta, and thankfully busting a gut took my mind off of the pizza in the room that smelled so darn good. I feel uneasy not having nutrition in my toolbag right now, not having control over getting in my greens and filling my body up with healthy fuel, but I know that it won't always be this way.

Tomorrow is also our 3rd wedding anniversary– how the years have flown by with moves, new jobs, trying to start a family, birthdays, summers, concerts, friends, and family. The other day I looked at SHL, as we sat cuddled in bed watching something funny, and said, "It's like having a slumber party with my best friend every night." It's not to say that we have a perfect marriage; I truly don't try to pretend like anything in my life is perfect. But there is nobody else in the world that I would want by my side. For better or worse, in sickness and in health. Sean and Sam holding hands

I look towards the future. There are moments in my day when I get a flash of panic, but I'm not entirely sure that I'm ready to face those flashes yet. For now, I move forward with knowing only what I can know: That I am resilient. That I am hungry! That I am loved.