Tuesday, March 25, 2014

Hard to Breathe

On March 7th, right before I called my parents, I thought, "This is the last moment of normal." Then I dialled their number and prepared myself for the worst, hoping that I could be wrong. Now as I look back, I know how grossly understated my gut feeling was.

In February, Dad began experiencing tremendous pain throughout his body. A few times that I spoke with him on the phone, he sounded on the verge of tears. Finally, he went to the VA hospital and got blood work done. I asked him for what, but he didn't know. All he knew was that whatever the test was, the levels were off the charts. More blood work, one ultrasound, and a few days later, that's when Dad told me that he was having a biopsy on his liver done. I felt that panic, helplessness, sorrow, and fear with which I've become all too familiar in the last few years.

The day I left Vancouver to go to Mifflintown was the day Dad had his biopsy. Seeing the condition he was in when he walked through the door of the hospital, the doctors decided to admit him. I took a red-eye flight, was picked up by my niece in Washington Dulles, driven to Mifflintown, and then my mom and I set off for the VA Medical Center in Lebanon.

Hours later, we were told there's cancer in his liver, lungs, bones, and lymph nodes. Terminal cancer. My dad. I looked at my sister and mother, and I knew that the news hadn't sunk in with them. Dad nodded in acceptance. We would wait a few more days for the biopsy results to come back, telling us whether or not the originating cancer was either small-cell or large-cell lung cancer. Small-cell responds much better to chemo. Large-cell, not so much. After a few days of waiting, we found out that Dad has large-cell lung cancer. And now, we do not take time for granted.

After I helped put Dad to bed tonight, after I rubbed his swollen, harden legs with edema, elevated them on pillows, made sure he was comfortable, positioned his oxygen tubes, and said goodnight, I walked around the house I grew up in, suddenly in tears. I felt my heart breaking into pieces, scattering across each room. I cried all over the stuff that I've had in my life for decades--that hutch where we keep the good china, the closet door I wrote the names of my crushes on, the basement, the garage, the porch swing--all of it was crumbling down already, burying the little girl I was. Then I snapped out of it because I had to.

There's no time to cry when you're busy making sure your father's potentially final days are comfortable, full of love, and hopefully laughter. There's no time to cry when your mother is scared and has so much of her own pain that it's become difficult to take care of the man she's taken care of for forty-plus years. There's no time to cry when you're doing all the paperwork that needs to be done, calling doctors, holding together a family in one place, while you have your own children and husband in a different country preparing to move into a new home and start another chapter of your lives.

There are many times during the day when I'm grateful for the fact that I've had cancer. It's easy for me to understand what the doctors are saying. I already learned this language. I can translate it to my dad, and even to my mom. I can remain calm for them. I can be their rock. I can tell them to cry all they want. I can tell them what reality is. And I can tell them that there always is hope, if that's what they want to believe.

So now I've been on both sides, neither of which are good. I wish I could say what tomorrow will be like, but I won't really know until we all wake up. Time to sleep.

Friday, July 13, 2012

5 years later...

On Thursday, July 12, 2007, I was diagnosed with stage 3 locally advanced ductal carcinoma of the triple negative kind. Back then, those were just a bunch of big words that I didn't understand. I could not have foreseen the impact that diagnosis would have on my life. But here I am, five years and one day later, Friday, July 13, 2012, writing these words. And where am I exactly?

I'm at gate D24 in the airport at Toronto, waiting for my flight back to Vancouver. I was here for a cocktail party given by my literary agency. Yes, I came all this way for a cocktail party for my own personal celebration (though no one else knew it as such). You see, this year has been a big year in a good way. I got my Canadian citizenship, I got my MFA degree from UBC, and I finished writing my first memoir. Originally, I was writing a memoir about growing up with the scant memories my parents shared about the Vietnam War and how I unearthed more history and stories as I became older. But when I was diagnosed with and treated for cancer, those stories and experiences became more layered and profound. Because my parents so generously came to help take care of me and my family during my treatment, I began to identify with their histories in a new way. Throughout my treatment, I experienced isolation, solitude, disorientation...psychic chaos. Everything that I had believed in about myself was being challenged. And it wasn't just a struggle for me, but for everyone around me. Five years later, I'm grateful for my parents for coming to live with me for almost a year, but admittedly, back then, I wasn't.

When I finished treatment and got through my surgery, I thought life that would resume as planned. I'd go back to school, write the book I had intended to write, graduate, and live happily ever after. Of course, we all know that's not what happened. I went back to school, started writing a new book about my cancer journey and how I began identifying with my parents' experiences...and then my marriage fell apart, and I stopped writing. A little over a year after my bilateral mastectomy, I attempted suicide. Then I did the work to get better, tried to pick up the pieces, and move on.

Still, the writing was nonexistent, while life kept happening. But the more that happened, good and bad, the more I kept seeing my life paralleling my parents'. And when I was ready to truly heal from all the devastation, the writing started up again. The result is my book, What Doesn't Kill Me.

As heavy as all that sounds, I can assure you that there's plenty of hilarity in the book, or so I've been told by those who have read it. I've had the tremendous fortune to have a number of agents offer to represent me, and I believe I chose the perfect agency, Anne McDermid Agency. Her team has been fantastic in the early stages of putting together a package to shop around to the publishers. I'm really excited to see that this is all coming together. My wonderful husband, Anton, is creating my website, and you can sneak a peek at brandyworrall.com. It's not finished yet, but we hope to launch it in a couple days. Also, if you haven't already done so, hop on over to Facebook to like my author page, Facebook.com/brandylienworrallsoriano.

So I'm here in Toronto, waiting to go back to Vancouver, where upon arrival, I have to go to the emergency room! Sadly, five years later, I'm still dealing with medical crap. In May, I had two procedures done. One was called a capsulotomy, where my plastic surgeon, who's been with me from the beginning, opened up my right breast and scored the hardened scar tissue. Hardened tissue in the breast is a long-term effect from radiation (which no one bothered to tell me about back then), and the tissue became so hard that it was causing pain. My surgeon told me it's very possible that she will have to do this again in the future.

The second procedure I had done was a hernia repair. Because of the mesh in my stomach not bending when I was pregnant with Moxie, I developed a hernia two inches above my bellybutton. Two weeks after surgery, I noticed that my belly had a waterbed effect. Apparently, I developed a seroma, which is a pocket of fluid built up in a cavity where there was surgery. I saw my plastic surgeon four times, during which she used a gigantic syringe to drain the fluid. She then decided that perhaps it'd be best to insert a drainage catheter and leave it there until the fluid cleared up.

Unfortunately, I developed a nasty infection that won't go away no matter what. That's why I have to go to the hospital after I get off the plane. Way to celebrate the fifth anniversary of my cancer diagnosis, right? It's too fucking fitting, is what.

But hey, I'm still here. Some of the friends I've met along the way these past five years are not. After I get off these damn antibiotics, I'm going to drink to them and to this crazy gig called life.

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Thursday, April 19, 2012

April 15, Karmic Tax Day

On my favourite food blog, Smitten Kitchen, blogger, chef, and humorist extraordinaire Deb does a quick look back at the recipes she's posted throughout the years at the end of her current post. For example, at the end of this week's recipe, "Banana Bread Crepe Cake with Buttterscotch" (I'm about ready to explode from sheer joy looking at the pictures of it), she tells her loyal, devoted fans and wannabe recipients of her creations that one year ago, she posted French Onion Soup and another recipe for Blackberry and Coconut Macaroon Tart; two years ago, it was New York Cheesecake, Shakshuka, and Easy Jam Tart; three years ago it was Chocolate Caramel Crack, Simple Potato Gratin, and Cinnamon Swirl Buns. I have to stop there because I haven't had breakfast yet, but I already know that whatever I have will pale dreadfully in comparison to what I'm fantasizing about for breakfast. I'm not trying to torture you too, but rather make a point. When April 15th rolls around, I do a similar look back, though not as delicious and savoury. April 15th is more like a bittersweet Thanksgiving dinner in my book.

Four years ago on April 15th, I had a bilateral mastectomy and TRAM-flap reconstruction. The night before, I thought I was going to die. Three years ago on April 15th, my marriage was falling apart. I wanted to die. Two years ago on April 15th, my son Véo was born and had several fatal birth defects. He died, and so did a large part of me. One year ago on April 15th, I was in tremendous pain and two weeks away from giving birth to the most perfect little baby girl. I was hoping that everyone would be okay and not die. This year on April 15th, something miraculous happened: everything was fine. I was grateful. Very.

To be honest, I was moody and out of sorts in the few days leading up to April 15th, but I didn't know why. Actually, when you're moody, do you really think about why you're moody? Or do you just brood? I mostly just brood. And then on the night of April 14th, it dawned on me while I was so blah. The realization came when Mylo brought up Véo out of nowhere. He asked what it would have been like to have Véo and Moxie, if Véo hadn't died. I said it would have been great--like another pair of Chloe&Mylo--but in reality, that's not how things would have been. I told Mylo that if Véo had lived, we probably wouldn't have had Moxie because my body takes an extra beating from having had cancer and going through a pregnancy afterwards. We were all dumbfounded by that realization.

It's hard not to think of how all our trials have a purpose and a path. And I do believe that there is Véo's spirit in Moxie. After all, Moxie was conceived the month that Véo would have been born, and now, Véo and Moxie's birthdays are exactly two weeks apart. How could you not believe in such a connection, such a cyclical wholeness? And perhaps that's why she's so spunky, this one--there's all that experience, challenge, and survival contained in that tiny body. So much energy!

Like I said, pregnancy took a toll on my body. In two weeks, I'm having surgery to repair the damage that giving birth Moxie has done: my lower left abdominal wall became weakened despite the Kevlar mesh, and I have a hernia above the mesh, above my bellybutton--both areas are painful, so it will be good to get that fixed. Also, my right breast has an excessive amount of scar tissue built up from the long-term, ongoing effects of radiation and is obstructing my saline implant, causing a lot of pain and immobility in my arm, shoulder, and neck. So my surgeon is opening me up there and removing all that scar tissue. After that and an estimated one-month recovery, I should be good as new, and maybe even better than that!

I used to be so scared every time I had to go under the knife, and I still deal with some fears, which are mostly based on past experiences with fear and surgery, but this time around, I am not as scared. I know that I have a beautiful family to wake up to. The only thing I really worry about is how I'm going to have to try not to laugh because laughing fucking hurts when you have abdominal surgery. Unfortunately, we have a house full of comedians. I guess there could be worse things in the world to anticipate dealing with. :)

Monday, September 19, 2011

For my friends

This morning, I realized that I’ve begun to recognize the signs. There’s the fight, the expression of it, the spirit. Then submission to treatment, whatever works—how ever one’s body is ravaged and
rebuilt it doesn’t matter, as long as there is still life. Then silence, with an occasional note to friends and family that s/he is still here with us, still fighting. More silence. Perhaps only one week passes, or two, or maybe a month. I’ll check in on his or her Facebook page if there is one. I’ll see comments from friends and family on the wall, words of encouragement and support. But there will be nothing from my friend, who’s been fighting the most awful of fights. Then, all of a sudden, I’ll get the email from Karine at Young Adult Cancer Canada (YACC). The subject line always tells the receivers to open the email when we have some quiet time, and we all know. Another one of us has passed.

It’s not a club that you ever want to be in, but if you must, belonging to this club will be life-changing. Of the 20 of us cancer survivors and patients who attended YACC’s Retreat Yourself 2009, four have passed away—one in five of my cohort in the last two years since the retreat.

Emilee, age 32.
Ann-Marie, age 25.
Caio, age 23.
Earl, age 23.

When you are part of a group that spends some concentrated time together, you walk away with memories of the fun stuff that happened in that short time, like sitting around the camp fire telling funny stories or the talent show where we all made asses of ourselves and have the pictures to prove it. You carry the memories of the bonding and confiding about your innermost thoughts and fears in a safe space. You don’t think that the person sitting beside you during meditation or circle is going to die soon. You think that everyone’s made it, everyone’s here, and everyone’s going to beat the odds and be here for a very long time.

But of course, that’s not true. It hasn’t been true in the two years since I attended the retreat. I have the good memories, and I cherish those deeply. But when I wake up to one of Karine’s emails, I have fear—who’s next? Will it be me? Will it be someone I love? . . . I have sadness because look, this is what is particularly sad about young adults getting cancer—they are young, they are just starting their lives. And now, when one of them dies, all that potential, all that spirit and drive—gone.

And I have survivor’s guilt, big-time. I am sitting here with my infant daughter, watching her play and kick and learn how to grab. She sees me sitting beside her, and she beams with joy and love. I tell her that her older brother and sister will be home from school later on, and we’ll all play with her. I know that when my kids come home, we are going to look at craft books and make some felt toys. And I told them at breakfast this morning that I’m going to teach them how to use my sewing machine by making cloth napkins. I get to have this life. But my friends who have passed, it’s over for them. And their loved ones—their life partners and parents and siblings—they will never experience life with them again. They must face a new reality of how to live without. Thinking of that kind of loss brings me full-circle back to the fear I first experience when I see an email from Karine in my inbox.

Having had cancer and having friends pass away from cancer, I cannot stress enough how fragile life is—and how that fragility is to be understood and appreciated. Most people my age aren’t faced with their mortality, and they are blessed to not think about dying until an older person in their family passes, probably when it is “their time” to do so. This is one of the reasons I often compare cancer diagnosis and treatment to going off to war. You don’t know how you will change, how you will come back, or even if you will come back. You don’t know how many friends you will see fall. But you know that if you survive, you will never think of life in the same way ever again.

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Thursday, August 4, 2011

We got moxie

See this cute baby, cancer? She's laughing at you. You came into my life four years ago, determined to destroy me. But through some twists and turns and lots of moxie, I kicked yo ass. We are all laughing.

I have to give cancer credit for one thing, though, as it has continued to give me pause for reflection. Undoubtedly, I am grateful for the path that I've been given. Four years after my diagnosis, I am with my soulmate and THREE kids! Last year on this day, Anton proposed to me in Maui, and birds came to bless us on the balcony (no joke!). I felt like Cinderella. We got married in April, and three weeks after that, baby Moxie was born. Our little miracle.

As much as I have to celebrate, being a young adult cancer survivor is certainly not without deep sadness. In June, we lost a good friend to this horrible disease. Caio, as everyone knew, was a beautiful pure soul. I think of Caio and his husband Miles everyday, and I feel anger, sadness, and loss. But I also feel love and inspiration. Miles and Caio were what I think everyone wishes for--fairytale love, child-like love, all love. You were just happy when you were around Miles and Caio. And now, I feel so sad for Miles, as he lives everyday without his beloved. Thinking about Miles and Caio, I know to never take for granted each moment I have with my husband and children. I feel the urgency that at any moment, this life could be taken away. Cancer has given me this urgency, in spite of my youth.

So you see...cancer has taken a lot from me. But in place of what has been taken, so much more has been given. And now, I get to live each day with so much moxie and a whole lot more.

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Friday, April 29, 2011

Plaster Princess

How many people get to celebrate three years in remission with a baby? At the end of today (exactly two weeks after my remission anniversary), we will have a little baby girl--our miracle and our princess.

I always do belly casts of my pregnancies ever since my BFF Lisa gave me a belly casting kit (I'm such an expert now, I just buy plaster). We are off to the hospital in an hour, but Anton and I spent some time this morning belly-casting Moxie. She's the only one that got to be casted right before she's born.

Here's a picture of Moxie's cast, on the left, next to Chloe's cast. The difference is remarkable. And while Moxie is being born at 36 weeks today, Chloe was born at 37 weeks (and I think Chloe's cast was done at 35 weeks). According to the sizing ultrasound we did two weeks ago, Moxie is even going to be as big as Chloe was, around 7.5 pounds. So imagine how squished she felt in there with the tram-flap mesh...and how things were mega difficult for me! But we will both get relief very soon!

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Thursday, April 21, 2011

A royal birth

April 29th is a special day. And it's not because I give a crap about the royal wedding--cuz I don't. But it's the day our baby is scheduled to be born. As I mentioned previously, this month has been pretty heavy with meaning and thought, from reflection on the third anniversary of my mastectomy to the question of when to have this baby, given the literal confines of my reconstructed body. Lots of hoping for the best, but realistically, it also means fearing the worst. I can't help it. I'm not one of those people that can turn a blind eye of denial to my fears. One example is that in preparing the house and our lives for a new baby, I have also factored in the possibility of losing her. It has only been one year and one week since we lost our son, Veo, to birth defects. So when I began unpacking all the new baby stuff we got, I didn't take some of the stuff out of the original packaging, or if I did, I collapsed the boxes and kept them safely in a pile in case I'd need to return the stuff to the store. Luckily, a friend of ours also gave us a ton of baby stuff, so if we don't end up using it, we can return it to her or donate it. But I just can't give the stuff a place, or count on having to use anything, just yet. I'm too scared to be that confident.

On Tuesday, when we found out the date scheduled for surgery, we were also told that what everyone had been planning all these months might not happen. When we found out we were having a baby, we began having appointments with both the OB and the plastic surgeon who has been involved with my case for over three years. The two of them were eager and happy to team up for this delivery, especially since it has never been done before. My plastic surgeon said she was especially excited because more and more of her breast cancer patients are young woman, who still want to and are capable of having kids post-cancer, and she wanted to see this experience through so she could tell them what to expect if they wanted to carry a pregnancy even if they've had a Tram-flap reconstruction. So the two doctors watched me grow and documented how my body has responded to the pregnancy over the past 35 weeks.

The last week and a half has been a rush to schedule a mutual day when the two doctors could do the surgery asap because my body is in quick deterioration from the strain of the baby's weight on my abdomen. But of course, it's not just about their schedules. They also have to find a time when the operating room is available. Their receptionists have been talking to one another; the docs have been talking to one another. On Tuesday, at our appointment with our OB, she nonchalantly told us that our plastic surgeon might not be able to make it at all. We were in shock. And no alternative was discussed. So the past few days, we've been tortured by waiting and unknowing. It feels to me like those horrible days when I'd wait and wait to hear word about when I was going to start chemo, or when I'd wait after getting some sort of blood test or scan done to tell me if my cancer metastasized. I emailed the surgeon's coordinator to see if I could get info from her. But nothing. I emailed her again to follow up, but all she said is that she hasn't been able to talk to the doc about it, and she hopes I have a nice long weekend. Then I thought, fuck, it's a long weekend! Everyone is off til fucking Tuesday! Does she really think I'm gonna have a nice long weekend when I'm worried out of my goddamn mind? I see the OB on Tuesday anyway, and then it's just three more days til the surgery.

I'm starting the process of accepting that things aren't going to go as planned, or at least I'm trying to accept that. I have to hope for the best, but now, even more so, I'm fearing the worst.

However, my body has been through so much, and despite all that, I'm still able to walk and mostly function as if nothing ever happened. There is something to be said about that. So things don't always go my way, so what? It's silly of me to expect that they would go my way, after all that has happened.

What do I dream of? Having a healthy baby girl, and having the strength to make it through the surgery and recovery process. What am I grateful for? My two happy, healthy, beautiful children...my endlessly loving, patient, handsome soulmate husband...my friends and family...and the fact that I can still laugh, even though I cry sometimes too. I guess my gratitude ends up trumping my fears. I don't regret how I've spent my time. And if I end up having more time to spend, I will cherish it all the more.

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