Friday, June 5, 2015

Update on My "Crappy Bones"

For a while now, when I take my supplements, my daughter comes over and asks, "Are you taking medicine for your crappy bones?" She's four, and yes, she's heard me refer to my bones as crappy enough times to qualify them always as Mom's crappy bones.

I got my bone density scan results (they scanned my hips and lower back), and the results are normal. That's awesome, but it doesn't explain to me why the bones in my leg and foot were noted as shockingly soft by the surgeon. So my general practitioner spoke with my former oncologist. Generally, bisphophontes are not part of regular practice at the BC Cancer Agency yet. They could argue that I need it for premature menopause, but since I'm on hormone replacement therapy (low dose), my bones should be protected.

The news doesn't relieve me, if I'm being honest. The whole shittiness around my type of cancer, Triple Negative Breast Cancer, is that it's still relatively new on the landscape of breast cancer, and studies are being done here and there, and a lot is unknown. So while another country might have research and data to back up a particular finding, another country (like Canada) might not accept that data as fully proven or some such and follow suit with treatment. This is why young adults like my friend Pat (http://www.youcaring.com/medical-fundraiser/help-pat-placzek-get-life-saving-cancer-treatment-/326039) has to do crowdfunding to get treatment to help him live--to go somewhere outside the country where there are experimental treatments that could help him.

When I was looking on the Triple Negative Breast Cancer forum, one survivor said that her oncologist has been giving her bisphophonates for years as a preventive measure against metastasis. But that's in the states. So this option is not available to me, according to Canada's findings and standards.

Here I am in a position that many patients often find themselves in: a medical mystery with no answers until some medical professional wants to do the extra legwork to find the answers or push to do something unorthodox. And in the meantime, I'm hoping that my doctors are right, that my fears are unfounded, that I won't get a bone metastasis even though from where I'm sitting (and have been sitting for two weeks), all signs point to a future in which I will meet cancer once again.

Monday, June 1, 2015

Dem Bones

Hi! It's been a long time since I've posted on this blog. I know that as time goes on, I feel like I move away from the cancer scene more and more--or at least, I would like to. When people see me, or they hear for the first time that I am a cancer survivor, they are surprised and comment on how healthy I look. They ask me how long I've been in remission (7 years and counting) and say how lucky I am to have "beaten" cancer. This is true. I am lucky. But what people don't realize that beating cancer entails having to endure life-long side effects, some of which are not anticipated or paid attention to much, especially when it comes to young adults. For example, even though I am in remission, I will deal with lymphedema, chronic fatigue and pain, and the hardening of radiated tissue for the rest of my life. But it's okay because I'm still here.

I had my 11th (?) surgery on Friday, May 22nd. Originally, I had gone to the orthopaedic surgeon to deal with my bunions, with which I was born. When I was a teenager, I had my right foot operated on, but the bunions (on both sides of my foot) grew back. Now that I'm older, the pain has been getting worse, especially since I also have arthritis. So a few months ago, I got to see a surgeon about my foot issues. Turns out, not only were the bunions a problem, but it seemed that my bones were shrinking, or that's how I understood it in my non-medical brain. The surgeon said that there was a gap between bones on the top of my foot, and that she would have to graft bone from below my knee and fuse it onto my foot to fix the gap. In addition, she'd have to insert a titanium rod into my calf to lengthen the tendon or something. Anyway, a fuck-tonne was going to be done to my left leg and foot (the right foot will be dealt with later, as the arthritis in it is bad and surgery would cause more chronic pain).

After my surgery, the surgeon told me that she was floored by how soft my bones are. She said that I have the bones of a 60 year old, that she wasn't expecting to see such deterioration. I asked her if my chemo had something to do with it, and she said maybe. But what was supposed to have taken 90 minutes for the operation took almost three and a half hours because the surgery was complicated by my soft bones.

When I saw my nurse practitioner, who also works at the cancer agency, a week later, and explained to her about the surgery and my bones, she was perplexed. She said that it's possible that the chemo could weaken the bones, but not to that degree. And I did just have my ovaries removed in December, but still, would my bones be that bad that fast? I take all the right amounts of calcium and vitamin D supplements and have been for years. I got a requisition to get a bone mass density screening done to see if I need to go on a bisphosphonate, a class of drugs for osteoporosis patients. And I'm not even 40 years old yet!

Coincidentally, as I left the doctor's office, I was checking Facebook and right there on my newsfeed was this article, posted by someone in the Triple Negative Breast Cancer Foundation group: http://www.sciencetimes.com/articles/6761/20150530/breast-cancer-stopped-tracks-new-technique.htm. This article basically describes how the particular breast cancer I had, Triple Negative Breast Cancer, causes holes to form in bones in order to produce a fertile ground for metastasis! And this is what floored me. For years during and after treatment, I'd been told that chemo could possibly thin my bones, that I would have to take extra calcium and Vitamin D to prevent the thinning. But this is the first time that I had heard that the cancer cells are actually forming holes in the bones to spread the cancer. I guess this is the problem with being "discharged" once you're in remission--there's little vigilance in what happens to you once the primary cancer is treated.

I'm lucky that I had this surgery. I'm lucky that I saw this article minutes after I talked to my doctor about my bones. I now have a plan to take bisphosphonates to try to slow down or stop this loss of bone mass and stop cancer's plan to make my bones its own nest for more cancer. And I'm lucky that I can tell other breast cancer patients and survivors my story--look into getting your bone density screened and talk to your oncologist or general practitioner about bisphosphonates, especially if you've had Triple Negative Breast Cancer. Hopefully there's still time to turn back the clock on these old bones.

Tuesday, October 28, 2014

Just Another Cancer Story

When I wrote the last blog post, I did not know that the next entry I’d be writing would talk about how much and in what ways I’ve been grieving the loss of my father. I didn’t know that the time between that blog entry and his death would be measured by a mere two days. Two days. I thought we had more time. Isn’t that always the heart of regret: how little quality time we have, and what we end up doing with it?

Every morning I open up my journal to write. I use a laminated copy of Dad’s obituary as a bookmark. The funeral home gave us a few of them after the service. I’ve scanned it so I can make more bookmarks when this one becomes too worn at the edges.

Next week, I’ll be returning to Mifflintown for the first time since Mom started her new life without Dad. My sister and I are trying to sell the house and the land, cull her and Dad’s belongings, help her move closer to my sister, who will be able to take care of her. I’ll do as much as I can, and then I’ll try to do even more because the pain and guilt I have from living so far away needs to be relieved somehow, even if for only a couple of weeks. But I remind myself that I have my own children to take care of, and that’s what Dad would have wanted me to do before anything else.

My children are the reason I’m having my ovaries removed next month. Being a BRCA-2 gene carrier, I have a much higher risk of developing ovarian cancer, and there aren’t reliable screening methods for it. This surgery is just the latest, and it’s also the least of which I’ve been concerned. If there’s a chance to be given more time, I’m taking it. The absence of my ovaries I will not regret.

There is so much I regret about Dad’s passing—why didn’t I make him get those tests and scans done earlier? Why did I let him go home from the hospital after the first time he went in? Why didn’t I take him back to the hospital sooner? Why did I make the decision to start the morphine when the doctor took me alone into the oversized sterilized conference room to tell me that Dad was actively dying, his kidneys and liver failing, his lungs full of blood clots, his ribs almost completely broken from the cancer eating at them? I know. I had to. I didn’t want to regret making him suffer.

Now, I don’t want to regret anymore. No more wasting time. Time to go home, say goodbye to that home, and help Mom create her new normal. I want to do all the things I know Dad would have regretted not getting to do, like seeing Chloe, Mylo, and Moxie grow up, laughing as much as possible, and helping Mom find the always elusive happiness, still.


I think of Dad, myself, my friends, and I think, “it’s never just a cancer story.” It’s a story about where the time goes and where it takes us along with it.

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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Location:Vancouver