tag:blogger.com,1999:blog-86177422557730030662023-11-16T09:06:18.197-08:00Brandy's Cancer Bashmy journey as a shitdisturber with cancer.Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.comBlogger200125tag:blogger.com,1999:blog-8617742255773003066.post-85156672129962760682020-08-31T08:51:00.002-07:002020-09-01T12:18:17.739-07:00Miracle Resolution Imaging<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1URBKkOdJbTzQ2Gbiqsr7y7Y9hEjRRZ9PgA0UB7V8HmWL5oeuUo2-o1l1rZ3MYLYgBBfcjlnJpMi1zmBU4KDyFWURQclmIWdkrA_OtnwcLcoY3cnXLm5WwgGKJt87XSZB5rQsR5pUgEfx/s2048/6EE0640B-3243-48DE-B38C-779B73EC5FA4.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1URBKkOdJbTzQ2Gbiqsr7y7Y9hEjRRZ9PgA0UB7V8HmWL5oeuUo2-o1l1rZ3MYLYgBBfcjlnJpMi1zmBU4KDyFWURQclmIWdkrA_OtnwcLcoY3cnXLm5WwgGKJt87XSZB5rQsR5pUgEfx/s640/6EE0640B-3243-48DE-B38C-779B73EC5FA4.png" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijj8r1U5vvvLFE7cGxd0bUC6TAeFWHpRjxs6KGfprXGlgByM08DLqpbFb5YnMEdGeGe9w0K4JT4VpuGcJa6ehIg26VFTCwbNyg-7HuBFtuSHOnMVBe6Fpv94kAeEYSayCX6NaH7dRWyOHC/s2048/44DD30EB-E5F5-4A9A-AC0D-11EF907A3EF3.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijj8r1U5vvvLFE7cGxd0bUC6TAeFWHpRjxs6KGfprXGlgByM08DLqpbFb5YnMEdGeGe9w0K4JT4VpuGcJa6ehIg26VFTCwbNyg-7HuBFtuSHOnMVBe6Fpv94kAeEYSayCX6NaH7dRWyOHC/s640/44DD30EB-E5F5-4A9A-AC0D-11EF907A3EF3.png" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLFSKgULkGxXxtXDjHL9RoBGTDh6m0NHCNj77j4q11sZt_KZypS0PAhOGN3rFmactMu8WaTwn8LRwmhJ_NAUfpHyRRKbQ3miahn43z7B4PaplnwkDjaLHRgoaUm7YeVu5RCDBCS7yxaE0w/s2048/8921EF62-1F7A-4183-845D-11DF875F2276.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLFSKgULkGxXxtXDjHL9RoBGTDh6m0NHCNj77j4q11sZt_KZypS0PAhOGN3rFmactMu8WaTwn8LRwmhJ_NAUfpHyRRKbQ3miahn43z7B4PaplnwkDjaLHRgoaUm7YeVu5RCDBCS7yxaE0w/s640/8921EF62-1F7A-4183-845D-11DF875F2276.png" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx9Zyep-JkD4AwLiArKMKkvu_HgQm0RG2tQ6kqzpHv06Qhh7TDICimYhcoa5VxKYE7sahB8o6WNy4AjBvKI9EXdLyDWt5g4ErqEDZlmsTZcaFukD2S0dmG2FzLaayMgO4Q4iCLFi166XPv/s2048/A6541344-8C47-46C6-ADCB-1B82E6C87925.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx9Zyep-JkD4AwLiArKMKkvu_HgQm0RG2tQ6kqzpHv06Qhh7TDICimYhcoa5VxKYE7sahB8o6WNy4AjBvKI9EXdLyDWt5g4ErqEDZlmsTZcaFukD2S0dmG2FzLaayMgO4Q4iCLFi166XPv/s640/A6541344-8C47-46C6-ADCB-1B82E6C87925.png" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMUft2dGLQj30YHSyUQgmGqjkXUFHXfdzxx9R_JGAmR3jJIPK0XW7l21MeDuZVgUXbhDJ7dNHYdIzgsnPbVYfq7sZ3_Vf4S07lOUmPR0paHkW3RCfcAx76cgpFQrwL-dfct0rIvWv-mkrT/s2048/CEE36FE5-CD12-4182-86AB-FAAB250B7091.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMUft2dGLQj30YHSyUQgmGqjkXUFHXfdzxx9R_JGAmR3jJIPK0XW7l21MeDuZVgUXbhDJ7dNHYdIzgsnPbVYfq7sZ3_Vf4S07lOUmPR0paHkW3RCfcAx76cgpFQrwL-dfct0rIvWv-mkrT/s640/CEE36FE5-CD12-4182-86AB-FAAB250B7091.png" /></a></div><br /><p><br /></p><p>Last year, there was a sudden interest in the mystery of rare illnesses—the hodgepodge of bizarre symptoms, real-life Dr. House’s, the global inclusion of arm-chair doctors, narrowing down of rare illnesses, and finally, through crowd-sourcing possible outcomes, the desperate patient and their family gets the much sought-after diagnosis and blessed treatment! I was so happy to watch these shows appear on all these streaming channels on my Roku—watching people like me receive the miracle diagnosis they’ve been waiting for their whole lives filled me with a hope that has always seemed frivolous and foolhardy. I went to these shows’ websites to see if I could be eligible to be a participant—maybe a miracle could happen for me as well. But reading through all the requirements was enough to make me worn out—and stressed enough to cause a pain flare-up. Then I would become angry because I could not even read a damn website without adding more pain to this wretched body. That is how cursed this body is. And I know that it’s just impossible for anybody reading this to fathom that, no matter how detailed I can describe that. Pain is too abstract for anybody outside of one’s own body to understand. That is why right now, my family physician is fed up, overwhelmed, and not very compassionate with me, and I don’t really want to talk to her anymore. She’s dangerous, in fact—she went to my psychiatrist and basically told him that I’m “overwhelmed” with health issues and that I should go back on my antidepressant—not giving a damn that I have a genetic mutation (MTHFR) that makes antidepressants make me suicidal. I’ve told her this, but clearly, she doesn’t give a shit. She wants to medicate me so I’ll stop bugging her. Sounds familiar to me—just like how the VA made my dad take lithium for a fake bipolar diagnosis in order to legitimize his PTSD, and so after taking lithium for 20 years, he got early onset Alzheimer’s. But I digress.</p><p>I can’t repeat this enough: I cannot get stressed, for stress automatically turns into more severe pain. Yet August was all about stress...and more pain and more symptoms. Yet when we paid $1800 out of pocket for a Prenuvo MRI—for which we had high hopes for answers—maybe we had our hopes set too high. Maybe I thought that finally, I would get my miracle like those people I watched last year. But to get absolutely nothing—we weren’t expecting that. And worse, this company has given us a runaround that we couldn’t believe. I don’t know what their deal is, but they are shady. I wouldn’t recommend going to them to anyone, unless you are desperate like we were, I guess. But if you are in that situation, I have some tips to share with you, which I will give at the end.</p><p>We had copied six of my doctors and specialists on my MRI report, but when we first got it, none of them, including my family doctor, received it. However, as soon as I got the report, I called my family doctor and read the concerning notes to her. There were three highlights: one was that my thyroid—which stopped working in June 2019 and about which no doctor or endocrinologist thus far is concerned—is asymmetrical, with the one side looking like popcorn; one was my right lung looking weird where I had the dissection in 2018; and the third was my spine being super weird with osteoporosis, arthritis, and shit. Of course, it’s much harder to listen to the report than it is to read it yourself, so she said that she would call me as soon as she got the results to discuss it with me. I had my doubts though because she never calls me with results and always downplays abnormal shit, so I had no faith in her at all to do this—and she still hasn’t called me even though I know she’s gotten the results. The next day, Prenuvo called and set up an appointment with us to talk to their nurse practitioner to go over the results in depth over the weekend.</p><p>So Anton and I talked with John the nurse practitioner early on the following Sunday. At first, John just read what was on the report at lightning speed. But then we started interrupting him with questions. That’s when things got really interesting and weird. When we got to the pancreas, which showed no mass or abnormality, I asked John if pancreatitis would show up on the MRI, since it’s inflammation and not a mass. At first he said yes, but in other ways, like in blood tests. I said, “Wait a second, I would have to tell you that I had pancreatitis for you to tell me to do bloodwork prior to the MRI?” He said, “Yes, why?” I said, “Well, I am pretty sure I had pancreatitis at the time of the MRI. Before the scan, I had a lab work from St. Paul’s that said I had symptomatic acute pancreatitis, even though my blood work was normal, and I had a high score on the CA 19-9, which was 26.” John said, “Oh really? Yes, if I knew that, I would have asked you for blood work, and we would have looked for that.” Damn!</p><p>Then John said there were things missing from my report that normally, he would see in other patients’ reports, like cervical lymph nodes, stomach lymph nodes, knees and ankles, and other stuff I’m forgetting—but that he would contact the Birch Group (or whoever the radiology group is) to get that info and update the report. He said it was “very odd.” Also, I told him that I’ve had these enlarged lymph nodes that I’ve had ultrasound three times, but that wasn’t noted on the report, so he said he’s ask for those too.</p><p>So when I’ve followed up with Prenuvo, they denied that they ever had these things that John said were standard—and they said that John is new to the team. But look—John did not sound new. He sounded like he’s had patients with Prenuvo for a while. Prenuvo sounds really shady. So IF you must use Prenuvo, ask them ahead of time what EXACTLY is included in the report, meaning, which organs, which bones...ask about the “Executive Report,” which John said he doesn’t know why patients don’t get that since they pay a lot of money for it. I’ve asked about the things John said, three times, and I was told on the phone and in email that John doesn’t know what he’s talking about or my points are invalid. Also, the one guy I spoke with, Mark, I complained about how rude he was. I asked why my doctors weren’t getting the report—because this was four or five days after the report was released to me, and a few doctors were asking about it. He told me to share it with them myself, which meant I had to give my doctors my password. I told him no, I spent $1800, which is a lot of money—they need to do it. He said, “Actually, that’s cheap.” WTF. He was so rude. So Anton called back and yelled at him. Then another representative called after that to apologize for this stupid ass. But that guy is still there. Anyway, another tip is to tell Prenuvo any symptoms you have. Be very specific with them. Be careful!</p><p>But John said further about pancreatitis is that if it’s chronic as opposed to acute pancreatitis that it depends on if it’s waxing or waning. If I wasn’t particularly inflamed at the time of the MRI, it wouldn’t have shown as much then either. Also, he said it is possible that I am one of the rare patients (and I am usually this person) who has normal blood work with lipase and amylase levels with an inflamed pancreas too. But we have to get to the bottom of it because chronic pancreatitis can turn into pancreatic cancer, for which I’m already high risk because of family history and the BRCA-2 gene.</p><p>Another illness that won’t show up on the MRI is Ehlers Danlos Syndrome, for which I am in the process of setting up genetic testing at BC Women’s Hospital. I compiled my raw genetic data and sent it to the geneticist there, and hopefully they will agree to give me the genetic testing for EDS. A large majority of the Children of Vietnam Veterans Health Alliance (COVVHA) have EDS. EDS is an awful affliction with many comorbidities that cause so much excruciating suffering—illnesses that would not show up on the MRI. But we are hoping that a real official EDS diagnosis, done properly with genetic testing first, will lead us to proper treatment as well. One of my good friends from COVVHA, who has a very similar health profile, has taught me a lot about her EDS treatment and management. So I’m following in her footsteps and taking steps to begin to get treatment in the form of a physiatrist and nutritionist. I feel this is a really good start.</p><p>I’ve been going down the wrong path for far too long, thanks to doctors with shitty egos, lazy attitudes, and motivations to cover their asses—as well as my own fear and desperation. But now that I’ve hit rock bottom and have been feeling like I’ve been at death’s door—especially how I had been neglected by the attending physician and her resident at St. Paul’s ER—I’ve taken everything into perspective and, with the tremendous help of my close friends, my loving husband, and my children, I’ve begun a true healing journey. I’m so grateful for this chance to rebuild my life. It’s a hard road ahead, but I’m ready.</p>Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-31978603667705047942018-06-19T14:35:00.001-07:002018-06-19T14:35:07.485-07:0042It's chilling when you decide to take fate in your hands in that way—to be sitting across from the surgeon, making the decision to go ahead with a high-risk surgery to remove the mass once and for all. Kill the mass before it kills me, hopefully survive the surgery and not be killed by the surgery. And this is where I become philosophical about life and death because I'm 42, the meaning of life. I told my friend Karin after making this decision that we all die, and this is just a matter of how we decide to write this story we call our life. I could wait and see and let this mass go and see how it plays out, like all the doctors are telling me to do. But what would that be like, to be anxious all the time, like I've been?<br />
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The pathology came back inconclusive, a false negative. The oncologist was unable to get tissue from the lesion, as it's in a difficult spot in the upper lobe of my right lung—which is why it's also in a tricky spot for the surgery because it's also near the main artery. So we still don't know if the lesion is cancerous or not. It has been growing slowly over the last five years, but stable over the last two years. The oncologist and the surgeon advised me to do the good old "watch and wait" game, but after ten years of living in Cancerland, I'm done with that. I'm tired, I'm worn down.<br />
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Anton and I listened to the surgeon. He explained the risks, which was like listening to the track of a horror film. He will try to go below the ribs first, using a video camera, minimally invasive, to obtain the mass. However, because the mass is semi-solid and in a difficult location, he might have to make a bigger incision in the ribs, where there could be substantial scarring from the radiation I had as part of my breast cancer treatment. That means that I could bleed a lot from all the blood vessels in that area, and he also has to worry about the main artery that's there. So there will be a vascular surgical team to assist.<br />
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The surgery will take place in mid-September, after I take my oldest daughter, Miss Chloe, to LA to see her favourite band BTS with her Ninang Mae. Yes, I am scared. But I am also eternally grateful for my beloved Anton and my children who give me so much love, that I feel so protected and safe. I know I will be fine. I feel supported. I will heal, and I will be better. I have friends who love me and who are rooting for me.<br />
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My body might be weak, but my voice is strong. I will continue to speak out and write because my words connect with so many people who feel lost—people like me who are going through their own cancer battles, who are sick, who are abandoned by family, who are isolated, who are battling mental illness, who have experienced trauma, who are searching for their identity, who need support. I'll keep using my voice for those people, and for myself. I started this blog almost 11 years ago to heal, and I'll continue to do so.<br />
<br />Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-32511476954728300952018-04-12T10:57:00.003-07:002018-04-12T10:57:44.428-07:00Future Perfect TensionI will have been in remission for ten years in three days by the time April 15th rolls around. Every April 15th since 2009, I've counted this anniversary. I've always marvelled at anniversaries and the comforting illusion they bring in the form of ritual and memory. We honour a particular day, either joyous or tragic or both, to say, basically, that we have survived a whole year of holding space for something profound, something that had altered our core being. Anniversaries are for moments that fundamentally forged our paths in life.<br />
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April 15th (and thereabouts)<br />
2008. Bilateral mastectomy and tram-flap.<br />
2009. (Discovery of first husband's infidelity and ensuing separation.)<br />
2010. Birth/death of son Véo.<br />
2011. (Anticipation of birth of daughter Moxie in two weeks.)<br />
2014. (Grieving father's sudden death from cancer.)<br />
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This year I turned 42, and I keep jokingly saying that I will discover the meaning of my life, exposing a bit of my nerd side. I also silently have been looking forward to April 15th this year, as it is to be my 10th "cancerversary," as we call it in our young adult cancer community—the anniversary of our remission. But this year, I cannot celebrate in good faith.<br />
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For the last few weeks my husband and I have been tested to our very core. Besides counting anniversaries, I've been waking up every morning with another number: the pain scale. My everyday pain has gone to a new level where my baseline is now 7, which for me means that my entire torso hurts, maybe one or two limbs have aches, but I can move about the house and perhaps do a chore or two, and I'm not crying. If I'm at 8-9, mostly everything hurts and feels like I've been beaten up, stabbed, and set on fire, I'm prone to spontaneous crying, and I mostly can't get out of bed. Beyond that, there is no number. So when I get up, I ask myself, what number am I right now?<br />
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Then there was that CT scan I had and the words on the results: "This is suspicious for adenocarcinoma." Lung cancer.<br />
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After we shook ourselves out of panic for the first few days, we started planning. If this happens, we will do this. Of course, we want nothing to happen, but if it does, then things will move fast, and this is what we will do. Etc. Etc. No time. Time. Time. Time. It is cruel. And then more panic. Because what if I have lung cancer?<br />
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Eventually, we settled down. We got the biopsy date. Which was yesterday. I had the biopsy yesterday at the Cancer Agency at 7:45 am. When we began down the curved sidewalk leading to the sliding doors, I began to hyperventilate. I had a PTSD panic attack just from seeing those doors leading into the Cancer Agency. Anton quickly grabbed my arm and position himself between Moxie and me. We couldn't find anyone to take Moxie to school in the morning, so we had to take her with us. I took some deep breaths, and we passed through the doors.<br />
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After I was prepped, the doctor came in and talked to me at length. Beyond the obvious "it's either cancer, or it's not," he told me some shocking news. All along, the two lesions in my right lung, where I had had radiation as part of my breast cancer treatment ten years ago, looked like fibrosis, or scarring from the radiation. Fibrosis is not supposed to grow. But because my lesions grew from the last CT scan, it's very worrisome. He told me that he has seen cases where fibrosis turns into cancer, and it's called fibrosarcoma. It's very rare, and only occurs in 1 in 2 million people. But he said that even if the pathology comes back negative, he recommends removal and resection of the lung because he doesn't want to keep exposing me to radiation and giving me biopsies, which is what will have to be done in my case.<br />
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Our hope is that the pathology is negative, we remove the mass, and resection—and that next year, we can celebrate the anniversary when I will have kicked cancer's ass yet again.Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-30328655662519700722016-08-10T18:59:00.001-07:002016-08-10T19:03:12.997-07:00Cancer is a Stupid BitchIf you haven't had the time to go back through the archives, to the beginning of this journey, I'll sum up for you what this 9-year-old blog is about: my fucking cancer and how it changed my life and continues to change my life. My break-up with cancer is ongoing. It's a shitty co-dependent relationship that no amount of couples therapy could fix or destroy. I will always have this relationship. It's the only one I can't fucking get out of.<br />
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Do you know where this is going? Yes, I'm going there. Even if it might be, I hope turns out to be, unnecessary. On July 12, 2007, five days after my brother-in-law passed away from non-smoker's lung cancer at the age of 43 after a three-year battle (numbers mean a lot to me), I was diagnosed with Stage III Triple Negative breast cancer, three tumours in my right breast and two affected lymph nodes (and would later find out that I also carried a variant of the BRCA-2 gene mutation).<br />
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I went through a chemo trial, radiation therapy, a bilateral mastectomy with TRAM-flap reconstruction from August 2007-April 2008. I made it to the magical 5-year mark, after which my particular type of breast cancer supposedly has a low risk of recurrence (though it sure doesn't seem like it to me, among my friends who all have had Triple Negative breast cancer)...plus 4 more years. So here I am, 9 years later, about to go under general anaesthesia for the 14th time since 2008 for surgery on Monday. While I'm having a routine capsulectomy (my 2nd one since I had my mastectomy), and it's no huge deal, I'm also having a biopsy on my left side, in my armpit, on a lump. I've had this lump ever since I had my mastectomy, and it's been scanned and ultrasounded like crazy, but it was always deemed scar tissue. It has gotten bigger, way more noticeable and painful this last year, so my surgeon is going to biopsy it while she's doing her other work.<br />
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Yesterday, I had a second CT scan on my lungs to check for growth on spots that have appeared--which have been there apparently for years, but only this year did the specialists decide that they wanted to look into it more.<br />
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So this is the thing: constantly checking on new symptoms or recurring symptoms of possible cancer is the norm for me. It's just part of my life, like vacuuming the floor, washing dishes, going on my monthly Costco run. There are times when I don't know whether or not doctors, other people, or even I myself think I am "in tune with my body" or if I'm "a paranoid, neurotic hypochondriac." How are you supposed to tell? Go with your gut? Yeah, see what I mean? Impossible to know what is right.<br />
What I know is that I am still here. Nine years and some days after getting the diagnosis that would change my life in big ways, I'm here. But honestly, I'm fucking tired. And once again, I'm waiting.<br />
For those of you out there who understand where I'm coming from, at least we can take comfort in knowing that there are other people out there who understand, even if this wrecked body can be a lonely space or shell or cocoon sometimes. I'm here, and so are you.Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com1tag:blogger.com,1999:blog-8617742255773003066.post-90445901924693237972016-04-13T19:00:00.000-07:002016-08-10T19:01:31.753-07:00Stats, Research, Conclusions and other BullshitAs of this April 15, 2016, I will be in remission for a solid 8 years. This is fucking awesome, make no doubt. So why would I be bitching about this existence called young adult cancer survivor after almost 8 years? Because there are still lessons that EVERYONE needs to learn beyond the numbers.<br />
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Since I've written my last post a few months ago, here's what has been going on with me medically.<br />
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1) I had a second surgery on my left foot. The first one, in May, was for a bunionectomy and a metal calf extension because my muscles are too tight and short. My bones are crap, according to the orthopaedic surgeon. So I had to get a metal plate drilled onto the top of my foot to keep my bones together. I'm good to go til June, when the surgeon checks out how my foot is doing and to see if should move on to the other foot. Why are my bones crap? Could be from the chemo I had. Or could be because of the kind of breast cancer I had. Who knows?<br />
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2) I've had some spells which seem to be reminiscent of my childhood epilepsy--except for a spell in June, when I passed out cold and had trouble talking when I came to. I had mild aphasia for about an hour. I had a migraine for the rest of the day and night. So far I've had two sleep deprivation EEGs, one ambulatory EEG, and an MRI done, all of which show that there is some sort of anomaly in my left temporal lobe but it is unknown what that is. No tumour though. Yay.<br />
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3) I had an endometrial biopsy done because even though I had my ovaries out in December 2014 due to increased risk of ovarian cancer for being a BRCA-2 variant carrier, I was still bleeding and cramping. It's not cool to have your period while going through menopause. Endometrial biopsies SUCK. I cannot emphasize this enough. The whole time leading up to the procedure, I saw 3 doctors, all of whom told me that a) it was just a slightly more invasive pap smear; b) I might have some cramping but it would be quick and not that bad; c) I could just take Advil to get rid of pain if in the odd case, pain persists. All of this is bullshit. I have one friend who had the procedure done recently as well (being a BRCA carrier, like me), and she was the only one who told me the truth. This shit fucking hurts. If you have given birth, you will know what I mean when I describe it as an active labour contraction. You're having some of your insides sucked out through a skinny tube that was stabbed past your cervix into your uterine lining. It's not pleasant.<br />
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4) My asthma has gotten worse this year, and I had a persistent cough that lasted over a month. So my general practitioner (who is fucking awesome, and who fortunately for me also works at the Cancer Agency, so she's my liaison and advocate for a lot of things) ordered me a chest x-ray. I really wasn't expecting anything from that, so when she called me a day after I had the x-ray done to tell me that there were spots that showed up on my lungs, it was quite a shock. She told me that the radiologist who looked at this film was concerned enough to look back at previous films over the years, and saw that those spots were on the past films. And this was the first I've heard of this. So I got a CT scan, and as of now, they are thinking that the spots are scars from radiation. I will repeat the scan in six months.<br />
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Why do I detail all of this? Because I'm sick of people thinking that when you are a young adult and you've survived cancer, that you're cured, and that if you continue to worry about a recurrence, you're neurotic. When I went to see my oncologist, who is a very nice person by the way, she made me feel like I was a head case. She said since I was seven years out, I shouldn't worry about recurrence because the recommendation given by oncologists is that if you are over 5 years in remission, your risk of getting cancer again is much lower. So I told my oncologist that I have several friends who have Triple Negative Breast Cancer like me who have had a recurrence 8-12 years into remission. She told me that it was the company I keep, not the norm. And maybe I should seek therapy for my fears. You're fine, she said. You don't need to worry. Like it's so easy! Of course it is.<br />
<br />
Fuck. That.<br />
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I will worry about this, and I will find other medical professionals who will take my worry seriously. Because this is my life. And it shall not be taken for granted.<br />
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<br />Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-12375003941374733522015-10-17T16:08:00.000-07:002015-10-17T16:08:07.656-07:00What Being a Cancer Survivor Means to Me, 8 Years Later8 years ago I was fighting for my life. Today, I'm still fighting. The impression that I had 8 years ago of what being a cancer survivor meant is not the reality I live today. I thought I would survive this awful illness and treatment, that I would be cured, that my life would go back to normal. Today, I think of the word "normal" as a delusion, an unattainable house on the other side of the picket fence. I actually can't even define what the word means to me anymore. I don't know what "normal" could be, but this is what my reality is.<div>
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I live with pain and fatigue. If you've ever been pregnant or on your worst period, imagine that fatigue. Then imagine that multiplied by, let's say, 3. Or maybe 5. That pain that you have? You feel it in every joint, tendon, muscle. Sometimes it's dull and nagging, if your pain meds kick in the way they should, and you'd qualify it a 5. Sometimes you can't get into any position that's comfortable or provides relief, and you just try to take sedatives to sleep through it. No matter when or how you move, it causes an audible cry or moan of painful transition. Relief becomes a necessary mental exercise.</div>
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I live with uncertainty and shitty odds. I know we all live with uncertainty, but my uncertainty stares at me in the face every morning I wake up, every night I go to sleep. When I hear my children laugh, I smile...and then I cry because I don't know how many more times I will get to hear them laugh, like if that amount is small enough to count on my fingers and toes. I think all the time that I probably won't see them get to grow up and become adults, and see what kind of adults they become. So I try so hard to focus on the gratitude now, that I am able to spend time with them and see them grow til whenever I can't see them grow anymore.</div>
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I live with a measuring stick in my brain: how my time line and all that I've gotten to experience measure up to those of my young friends who died from cancer: the kids they didn't get to have, the relationships they didn't get to experience, the dreams they didn't get to realize. Sometimes, and I know this sounds crazy and might offend some people, I smoke a cigarette in order to be able to breathe, to level the playing field in a sense, if you can imagine. It's like I'm sitting there, sucking in the carcinogens once in a while to feel less guilty for being alive, like life is a cosmic soccer match (I'm not athletically inclined, so you can substitute whatever sport metaphor suits you, okay?). </div>
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So I sit there sucking down my Benson and Hedges menthol slim and sipping my homemade red wine, watching some sparrows jump around the dog house. And all of a sudden, all I hear is the door behind me open, and my four-year-old firecracker Moxie say, "Mama, can I draw a picture of you?" And that sound is music to my ears. Relief is immediate for once.</div>
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That's what being a cancer survivor means to me, 8 years later.</div>
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*written in honour and memory of my friends who have moved on</div>
Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com5tag:blogger.com,1999:blog-8617742255773003066.post-20302327349035561072015-10-05T12:51:00.001-07:002015-10-05T12:51:35.892-07:00Wanted: More Moxie<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYrTqtRvvhDdMHLBtV4UNK0jOhzjvLh5sDpc8Zk1IxhesOHL_5nZhYHEB_hMm7Ai0Ye-7bkuMC2hu3m0HcYfLi9qFlY2_4dPNGbCb6cGYIxyFAgjCy8PPmnl8Mwk67FxiZxJbKmUviGJyi/s1600/IMG_5809.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYrTqtRvvhDdMHLBtV4UNK0jOhzjvLh5sDpc8Zk1IxhesOHL_5nZhYHEB_hMm7Ai0Ye-7bkuMC2hu3m0HcYfLi9qFlY2_4dPNGbCb6cGYIxyFAgjCy8PPmnl8Mwk67FxiZxJbKmUviGJyi/s320/IMG_5809.jpeg" width="240" /></a></div>
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<span style="font-size: xx-small;">Photo by Pia Massie</span></div>
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This year has been quite the Worrallwind (haha, I'm a cheeseball) ever since my book came out in November. Every new month that rolls around leaves me in shock that the previous month evaporated before I could take stock.</div>
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I'm writing this post from my hotel room at the University of Connecticut, where I'm giving a reading tonight. I'm grateful that I have written a book that people want to read and that more importantly, one that has some big messages and topics that get people thinking, like Agent Orange, mixed race, PTSD, young adults with cancer, or to put it simply, survival.</div>
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Being a young adult cancer survivor means a lot, and the month of thinking about what that means <i>officially</i> is now: Breast Cancer Awareness Month, or as some of us who are cynical about the Pink Ribbon corporate movement call it, Pinktober. But here's what it means to me, just another individual who has survived and keeps surviving: taking it one day at a time. Sure that's a big cliche, along with carpe diem (I just got a pair of socks that say "Carpe the fuck out of this diem"), and all that, but it's super true, especially when you realize that your expiration date is likely to be much shorter than that of most people your age.</div>
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I know--we don't really know when we will die. But statistically, my odds aren't great. I don't consider myself middle-aged. I consider myself at the end of my life. Hold on...don't get all argumentative and optimistic when I say that. I know that's your reaction. But look, it's true. So far, I've beaten the odds big time. But I also live with chronic fatigue and pain, and I'm not saying those two things like they are mosquito bites or little cuts or burns. I don't remember what life is like without pain, let me put it that way. And I don't think I will ever know that again. That's my reality. So yes, I do feel like I'm 80 years old, and I will probably feel like that even more so as time goes on. So I'm at the end of my life, and each day I get to live it is a gift. I can accept that. I have. My 40th birthday is coming up in a month, and I'm super stoked for that. But will I make it to 50? I will be surprised if I do.</div>
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My reality is that as a survivor of this particular type of breast cancer, I worry about metastases all the time. Currently, I'm doing a battery of scans and tests to see what's going on with my brain. Triple Negative Breast Cancer survivors have an increased risk of brain mets, and recent tests that I've done show that instead of the suspected epilepsy that I had as a kid making a return, there is something else causing dysfunction in my left temporal region. I know I shouldn't jump to conclusions and worry about it, but that's what I do. Luckily, my doctors are on it and have been doing EEGs, CT scans, and will do an MRI on my brain in a couple months. In the meantime, I endure the headaches and the uncertainty. There's always the uncertainty.</div>
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Every single day I wake up and wonder how much I will be able to do. In the last two months, I can tell that my body is aging much faster than ever. Aches and pains of all kinds have become a baseline standard; pain level is about a 6 on the pain scale, and if it gets worse than that, I wait a little while to see if I have to make the trip to the hospital. But the fucked up annoying part is this: I have stuff to do. I have stuff I <i>want</i> to do. And when I can manage to get out of bed and do it, it's nothing short of a miracle to me.</div>
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On the outside I look healthy. No one knows how much I'm falling apart on the inside. I need wheelchair service when I travel, and I can feel the glares from people who see me in the wheelchair, and I can feel them judging me. Being disabled sucks. Being invisibly disabled adds another layer of suck to that.</div>
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I am super grateful that I am still here, that I have support, and that despite my pain and chronic, recurring issues, I can manage to do the things I love, even if it's at a much slower pace than I would like. But let me tell you, being aware of the breast cancer epidemic is not about pink ribbons. It's about thinking of the actual human beings who have to survive day to day, beyond the cancer, because of the cancer. Instead of giving into the pink ribbon campaign, research local organizations that help people with cancer (not just breast cancer). Support those. Because those of us who are surviving—that's where we get the most support. Not from Komen. Not from Revlon. But on a local, familial level. Surviving is about who is around you now, and how those people will help you reach the next day, if there is to be one.</div>
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So my wish for October is to have more moxie. Always. That's what survival is.</div>
<br />Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com2tag:blogger.com,1999:blog-8617742255773003066.post-86396485914365525862015-06-05T13:47:00.001-07:002015-06-05T13:47:46.941-07:00Update 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.<br />
<br />
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.<br />
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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.<br />
<br />
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.<br />
<br />
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.Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-54035040473585485552015-06-01T10:57:00.001-07:002015-06-02T12:08:38.187-07:00Dem BonesHi! 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.<br />
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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).<br />
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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.<br />
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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!<br />
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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.<br />
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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.Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com1tag:blogger.com,1999:blog-8617742255773003066.post-29351255384382730042014-10-28T12:52:00.001-07:002014-10-28T12:52:16.867-07:00Just Another Cancer Story<div class="MsoNormal">
<span style="mso-ansi-language: EN-AU;">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?<o:p></o:p></span></div>
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<span style="mso-ansi-language: EN-AU;">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.<o:p></o:p></span></div>
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<span style="mso-ansi-language: EN-AU;"><br /></span></div>
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<span style="mso-ansi-language: EN-AU;">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.<o:p></o:p></span></div>
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<span style="mso-ansi-language: EN-AU;"><br /></span></div>
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<span style="mso-ansi-language: EN-AU;">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.<o:p></o:p></span></div>
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<span style="mso-ansi-language: EN-AU;">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.<o:p></o:p></span></div>
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<span style="mso-ansi-language: EN-AU;">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.<o:p></o:p></span></div>
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<span style="mso-ansi-language: EN-AU;">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.<o:p></o:p></span></div>
Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0Vancouver, BC, Canada49.261226 -123.113926849.09541 -123.4366503 49.427042 -122.7912033tag:blogger.com,1999:blog-8617742255773003066.post-76266716592216484722014-03-25T19:39:00.001-07:002014-03-25T19:39:54.229-07:00Hard to BreatheOn 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com3Mifflintown, PA 17059, USA40.5697996 -77.396933840.5637691 -77.4070188 40.575830100000005 -77.3868488tag:blogger.com,1999:blog-8617742255773003066.post-80005946582134733572012-07-13T13:45:00.001-07:002012-07-19T00:15:19.134-07:005 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?<br />
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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.<br />
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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- Posted using BlogPress from my iPad<br />
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Location:<a href="http://maps.google.com/maps?q=Toronto%20Pearson%20International%20Airporty%4043.682417%2C-79.615805&z=10">Toronto Pearson International Airporty</a></div>Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-90241888750224636242012-04-19T09:34:00.000-07:002012-07-19T00:15:50.210-07:00April 15, Karmic Tax Day<div class="separator" style="clear: both; text-align: left;">
On my favourite food blog, <a href="http://smittenkitchen.com/">Smitten Kitchen</a>, 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.</div>
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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.</div>
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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.</div>
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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!</div>
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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!</div>
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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. :)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZeCww_p00CpZx4NkoH9pc48NEY4VADO4MHahfm_dhI5FdQ2cO3h4kfg4ecqlIur82aS4dO1TGgOFBFjYZ6DtCU8Z31XdstElfd1R_qKy_O-bzihX4DLDaieWrdWPrRU33NtcsGuFeAsQF/s1600/brandylienworrall_DSC_2752_1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZeCww_p00CpZx4NkoH9pc48NEY4VADO4MHahfm_dhI5FdQ2cO3h4kfg4ecqlIur82aS4dO1TGgOFBFjYZ6DtCU8Z31XdstElfd1R_qKy_O-bzihX4DLDaieWrdWPrRU33NtcsGuFeAsQF/s320/brandylienworrall_DSC_2752_1.jpg" width="320" /></a></div>Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-4854983783217062962011-09-19T09:58:00.001-07:002012-07-19T00:16:19.978-07:00For my friendsThis 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<br />
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.<br />
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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.<br />
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Emilee, age 32.<br />
Ann-Marie, age 25.<br />
Caio, age 23.<br />
Earl, age 23.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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- Posted using BlogPress from my iPad<br />
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Location:<a href="http://maps.google.com/maps?q=Vancouver%4049.260375%2C-123.178826&z=10">Vancouver</a></div>Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com4tag:blogger.com,1999:blog-8617742255773003066.post-4744024896671526542011-08-04T21:36:00.001-07:002012-07-19T00:16:38.427-07:00We got moxieSee 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.<br />
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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.<br />
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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.<br />
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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.<br />
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Posted using BlogPress from my iPad<br />
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Location:<a href="http://maps.google.com/maps?q=Vancouver&z=10">Vancouver</a></div>Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com3tag:blogger.com,1999:blog-8617742255773003066.post-72753115529422910932011-04-29T11:24:00.001-07:002011-04-29T11:24:36.735-07:00Plaster PrincessHow 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.<br /><br />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.<br /><br />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!<br /><br /><center><a href='https://picasaweb.google.com/brandylien.worrall/BloggerPictures?locked=true#5601073189940572642'><img src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1mXqwRR3z-b-hINFejGQfuf5Q5iXgo0hsaB0aagyTl2-62TAfqhzQYmvFJTJsX_W9i4bhe7JkZ0onDDTknvPOlaOsfRNkZCKPeuZBhmee5ybHzqqzKoYwwZAta9sd5c3oVSdRka7APFc/s288/0.jpg' border='0' width='281' height='210' style='margin:5px'></a></center><br /><br />- Posted using BlogPress from my iPad<br />Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-26854949290395610142011-04-21T20:38:00.001-07:002011-04-21T20:38:20.821-07:00A royal birthApril 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br /><br />- Posted using BlogPress from my iPad<br /><p class='blogpress_location'>Location:<a href='http://maps.google.com/maps?q=Vancouver%4049.260756%2C-123.178860&z=10'>Vancouver</a></p>Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-62734405540254566782011-04-13T15:21:00.001-07:002011-04-13T15:55:29.525-07:00Freaking. Out.So...I can't seem to escape April being my uber-high stress month. Three years ago, on April 15th, I had my bilateral mastectomy and Tram-flap reconstruction. Two years ago, my husband at the time said he wanted a divorce. Last year, I gave birth to our son Veo, and he died because of all his birth defects. This year, Anton and I are having a baby! This, of course, is a monumentally joyous occasion, unlike the last two years, but I'm still losing my mind, just a little.<br /><br />With my mastectomy, I totally freaked out. I obsessed over my death for a few months before, working out and away all these morbid fantasies with an art therapist so I could calm my wild mind. I got depressed over the thought of my kids growing up without their mom, and all I could imagine was going under and never coming back again. But obviously, everything turned out fine, and not only did I come back, but I've been cancer free for almost three years (as of Friday).<br /><br />Now, I'm starting to do the freaking out thing again, and I keep thinking about how at least with the mastectomy, the surgeons have done it so many times before and knew exactly what they were up against. With this c-section, they don't have an exact idea since it's never been done before. I try not to think about the scenario where they take out the baby, see the mesh and the damage, and say to themselves, "Now what?" or "That's worse than we thought." I think about how the worst would happen, and I'd be leaving my new husband with a new baby, and there would be three kids without a mom. I try not to think like that; I focus instead on the excitement of having a new baby--a baby who's a little pioneer on the landscape of having a baby after breast cancer.<br /><br />But at night, when everyone is sleeping--that's the hardest time. I'm alone with my thoughts and my body full of pain. I look at Veo's tiny footprints on our shelf where I honor the people who have died--those who have made an impact but whom I have never really met, like my Vietnamese grandmother and Vietnamese half-brother.<br /><br />I need to remember that with heartache and loss come motivation and inspiration to survive and to be grateful for what we have now. I have a husband who brings me laughter and love every single day we are together. I have two kids who impress me with their imaginations and wonder, and who make me feel good about being a mom. And I have a baby inside, fiercely kicking and living up to her name, Moxie. I like to think she's trying to tell me something along the lines of, "Don't worry, Mom. I'm a fighter, and you are too. And we'll all be together soon, safe and sound."<br /><br />Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com2tag:blogger.com,1999:blog-8617742255773003066.post-85307156638364690862011-04-11T14:59:00.001-07:002011-04-11T14:59:33.541-07:00Growing PainsHere is me with my eight-month-old baby belly! Eight months! Not that huge, thanks to my Tram-flap mesh.<br /><br /><br /><center><a href='https://picasaweb.google.com/brandylien.worrall/BloggerPictures?locked=true#5594449047625684418'><img src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDO3373OCQcuj3ipVeVHQKdV3xvRBKHFft2LljdkotW6CFOajmASfRpPssuA092oGSJn4Ec1yia-iFM5kQmYGsikS1V1y5Fvp2VZsJZCJEWG9F9S4W95rBFXWrhxryZ1spFZuQMqD-Eag/s288/0.jpg' border='0' width='281' height='210' style='margin:5px'></a></center><br /><br />This pregnancy has sure been a ride. The last trimester has been increasingly difficult and painful. I knew that no one, including the doctors, knew what would happen to me as the baby continued to grow. But what I didn't anticipate is that the doctors could not really understand what it feels like, and hence, were at odds about what to do with my pain.<br /><br />First, I started having burning sensations in the lower part of my abdomen, which is where the sutures for the mesh are. It felt like my flesh was tearing, and in fact, that's exactly what has been happening. The pain comes and goes, but now when it comes, it's pretty intense, like somebody stabbing me from within.<br /><br />Another issue is walking or sitting or moving from one position to another. I feel like my pelvis and joints are locking up, and I get stuck mid-air, afraid to move because I know how painful it will be when I complete the movement. But obviously, I can't stay like that, so I take a big deep breath, and just move (and scream).<br /><br />So my family doctor prescribed me hydromorphone for the pain. I asked her about how it would affect the baby. She said that the baby would go through a little bit of withdrawal for a week during which she would be cranky, but it wouldn't be that big of a deal, since we had to weigh the circumstances of the intensity of my pain because me being in pain isn't good for the baby either.<br /><br />For a few days, I took the pills, and it helped a little, but my OB wasn't happy about that. So I took Tylenol with codeine instead when I had pain at night, and that gave me a tiny bit of relief. Now, I've become used to being in pain and don't take medication that much.<br /><br />Everything is compressed. There is no room. My OB noticed the appearance of my belly, which is like a muffin, with a band where the mesh is, and then a roundness at the top where the band is not. Breathing is always difficult in the last couple months of pregnancy, but it's even more so now. And my doc gave me Ativan because I've been feeling claustrophobic within my own body and having panic attacks.<br /><br />Now, my plastic surgeon has ordered me to bed rest because the weight versus the constriction has become a bit worrisome. And my OB is considering moving the delivery date up at least a week early. I asked the OB if they will put me under general anesthesia after they deliver the baby via c-section in order to repair the mesh, and she said she doesn't know. The part where they don't know what they are going to see scares me a bit, but I trust that they are the best experts to do the job.<br /><br />I have all the usual pregnant mom instincts like nesting and feeling restless, but I also have new fears, especially not knowing how the surgery and recovery are going to be. However, when I feel the baby move, whether in a small or big way, I am happy that she seems okay, if not a little concerned about how much space she has in there. We are in this together, she and I, and I can't wait til we have our own space.<br /><p class='blogpress_location'>Location:<a href='http://maps.google.com/maps?q=Vancouver,%20BC,%20Canada%4049.260808%2C-123.178970&z=10'>Vancouver, BC, Canada</a></p>Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com1tag:blogger.com,1999:blog-8617742255773003066.post-21815537315006591632011-01-25T09:54:00.000-08:002011-01-25T10:01:23.977-08:00Is Breast Cancer Caused by a Virus?Anton and I saw these short films on YouTube a couple months ago, and they blew us away. To think of the possibility that breast cancer could be caused by a virus (like HPV causes cervical cancer), and that if so, there could be a vaccination and a cure!...And to wonder why the medical field hasn't encouraged research into this--these ideas nag at us. But please watch these videos, spread the word, and think of ways that you could possibly play a role in increasing research into a breast cancer virus.<br /><br />(If you're having problems viewing the videos here, just click on the YouTube icon on the bottom righthand corner of each frame.)<br /><br /><br /><iframe title="YouTube video player" class="youtube-player" type="text/html" width="480" height="390" src="http://www.youtube.com/embed/-5bDsOCekA8" frameborder="0" allowFullScreen></iframe><br /><br /><br /><iframe title="YouTube video player" class="youtube-player" type="text/html" width="480" height="390" src="http://www.youtube.com/embed/rgybR0YMKDE" frameborder="0" allowFullScreen></iframe>Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-17994407261526842492011-01-19T21:06:00.001-08:002011-01-19T21:17:17.346-08:00Alive<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7BoTQF1q4cW_VV0HD-qD8QrRtc5L_BEifUWwaCBP3j3hTJF4IN8MAn5AaQTiJrA-dIgQ_Yielu0nLmJfX_-72MQ2tK4rRbviTYE-ZnWmtH8zCtfuolskG_N3t0lMB_DdYwtWbqP8EOA27/s1600/Brandy+Worrall-5.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7BoTQF1q4cW_VV0HD-qD8QrRtc5L_BEifUWwaCBP3j3hTJF4IN8MAn5AaQTiJrA-dIgQ_Yielu0nLmJfX_-72MQ2tK4rRbviTYE-ZnWmtH8zCtfuolskG_N3t0lMB_DdYwtWbqP8EOA27/s320/Brandy+Worrall-5.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5564131166682676434" /></a><br />A week after we told the kids that they were getting a new sibling, Chloe asked, "Is the baby still alive?" Her innocence and concern tugged at my heart. She's thought of Veo, the brother she and Mylo lost inexplicably. And now she's worried about her baby sister. I told her that yes, the baby is alive. She and Mylo smile, ask questions, make up stories for and about their baby sister. And yes, Chloe, the baby is alive. We are all alive.Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-15907974107034729632011-01-18T22:50:00.000-08:002011-01-18T23:39:58.109-08:00RabbitsIt's soon going to be the Year of the Rabbit, which happens to be my year. Rabbits are creative, compassionate, and sensitive. And our baby girl will be the same. Yes, we are having a baby!<br /><br />Soon after Anton and I got engaged in Maui in August, we found out that we were pregnant once again. We faced this new blessing with a lot of fear, as we had been devastated by the loss of Veo in April. But as soon as we saw all my doctors, we were reassured that we would be well taken care of. The genetics department at Women's Hospital took charge of extra screenings and tests, to see if this baby would have the same defects that Veo had. We also had more appointments with my family doctor, obstetrician, and plastic surgeon, all of whom have been keeping a close eye on me.<br /><br />We kept the pregnancy mum, especially from Chloe and Mylo, because Veo's death was so hard on everyone. We wanted to make sure we would spare the kids those horrible feelings and confusion they experienced with the loss of their baby brother. And with each test that I took, each ultrasound that we waited for, we held our breath. Luckily, everything has turned out okay, and we have now just been able to share the miraculous news with all our friends and family!<br /><br />Baby Girl (yes, we found out!) is kicking me full force now, and I savour each movement I can feel. But it has been a difficult challenge on my body, and today when I had a check-up with my Ob/Gyn, she said, "Yes, it's going to be a long pregnancy." There is, of course, still the issue with my TRAM-flap. If you look at me, you probably wouldn't recognize that I am over five months pregnant. I just look like I went on a carb binge. The metal mesh is not budging, and I'm not sure how or where baby is growing, but she is. It does make walking and moving and turning in bed a less than comfortable experience. But I just have to take it slow. And it seems, for whatever reason, that the epilepsy I had as a child has returned somewhat, and I've had three seizures since November. I've seen a neurologist and had two EEG's, but there's not much we can do at the moment but be careful. And then there was a kidney infection which left me hospitalized in Los Angeles for five days. Whatever. I can take it!<br /><br />The doc wants me to come in every two weeks instead of once a month. She and my surgeon are closely watching my growth, to see when it will be the best time to do the surgery to take baby out. It's going to be a complicated C-section, as they will have to cut through my mesh. At the same time, I will likely get a hysterectomy because of my increased risk of getting other reproductive cancers. Am I sure I want to do this? Absolutely. I've got two beautiful children and a baby on the way, and I feel that after all that, my family will be complete. I want to be around for a long time to see them all grow up.<br /><br />Yesterday, I had my six-month oncology check-up, and I am happy to say that I am still in remission. I am half-way to the five-year mark, when we can all breathe a huge sigh of relief, because at the five-year mark, my changes of recurrence go way down!<br /><br />I'm finding that almost three years after having had my mastectomy, I'm finally at a point where I can move forward with more confidence, with less fear. I have to remember: I have survived so much, and I am a better person in the end. I have learned so much in the past three years that I can teach my children, and other cancer patients and survivors who feel so alone. In November, Anton and I have the privilege of attending a young adult cancer survivor conference in St. John's, Newfoundland (see my links to the right for info on Young Adult Cancer Canada). To say that the weekend was amazing and inspirational is an understatement. So many of us came together as a family, remembered those who were lost this past year to cancer, and motivated each other to be there for and to reach out to other young adults with cancer. One of the main issues for young people with cancer is the feeling of isolation: you have cancer but you're young--you're not supposed to have cancer. You're supposed to be starting a career, having kids, getting married. Now what? At this conference, we learned how to cope and thrive, and to help others do the same. It gave me and Anton a lot of hope and comfort.<br /><br />Now we find ourselves in this new year, with new promise for positive energy and happiness. We have survived, we will survive, and we will be here to help others do the same. Cancer is always a curse, but it can be broken. When the curse breaks--when the patient breaks the curse--the only thing left to receive are the blessings.<br /><br />One day, I was reflecting on all that has gone on over the past three years. It all seems like too much. But when I ask myself if I would do it all over again--if it meant that I had to do it all in order to get to where I am today, with my kids, with Anton, with this new baby that will complete our family--without hesitation, I say, "Absolutely. Yes."Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-19024254471937699412010-08-04T09:26:00.000-07:002012-02-01T23:26:05.210-08:00CertaintyI feel like I've come full circle, yet instead of the fear that paralyzed me three years ago, I am full of positive new energy, drive, hope, and love. The last time I was in Hawaii, it was 2007, and I had just been diagnosed with cancer. XH and I went to Honolulu to celebrate our third wedding anniversary. As I am thinking about it now, there was love but also sadness and uncertainty...about life and where it was going to lead the two of us, especially with a terrifying cancer diagnosis. We visited a Buddhist temple at the suggestion of two friends whom we serendipitously ran into at the airport. Our afternoon with Roshi was a grueling examination and exploration about that which I am most deeply attached to: pain, loss, fear. And during the next three years, I would be faced with seemingly insurmountable challenges that would bring me face-to-face with those attachments. In order to survive, I had to experience pain, loss, and fear...and then let it all go.<br />
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Here I am, three years later, in Maui celebrating year one of what I know for certain is going to be a life-long relationship with my soulmate. I am cancer-free and healthy. My illness has let go of me, and I have let go of a lot of the pain that has come upon me throughout my treatment and recovery, my divorce, and the loss of our son in April. I still mourn Veo's death, particularly because this would have been the month he would have been born if he had not had that fatal birth defect. And I sometimes still have those unanswerable questions: did my cancer treatment somehow cause that defect? Was it my fault? But a comforting thought came to me yesterday as I was standing on the balcony in Glendale with Anton: the name of our baby boy, Veo Liam, is an anagram for "I am love." Even though I am a self-professed word nerd, we did not name him with this significance in mind. When I told Anton my realization, we both fell silent, smiled, and hugged each other, and it felt to me that at that moment, Veo had come to us to bring the two of us even closer together.<br />
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As I sit here on our first morning in Maui, with Anton still sleeping, I am full of reflection about how I got here. And to me, it all comes down to the fact that there is nothing else like this moment.Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com0tag:blogger.com,1999:blog-8617742255773003066.post-65851549906782407872010-05-29T18:51:00.001-07:002010-05-29T19:20:49.115-07:00Universe, can you please cut me some slack?April 15, 2010 was the 2nd anniversary of my bilateral mastectomy. It was also the day that our son, Veo Hieu Liam Worrall-Soriano was born and then died. Veo had a birth defect called anencephaly, which causes the skull to not form and therefore, the baby would never have a chance to survive. I was admitted to Women's hospital to give birth to Veo and to say goodbye. When labour was induced, I felt the familiar pains of childbirth, but with the added pain of knowing that all the dreams we had for Veo would never come true. Each contraction that passed through me was another permanent wound. I knew that before long, we would be able to hold Veo, but only for a little while.<br /><br />Throughout our stay at Women's, the staff--from the nurses to the social worker to the spiritual counsellor--helped us in every single way they could, and we will always be so thankful for that support. But as we came home, we felt the immense sadness and void fill up the space around us. We spent time together, just the two of us, and we also thought about how we would help Chloe and Mylo deal with the loss of the baby brother they were so excited to have in their lives.<br /><br />Even though they are only 5 and 6 years old, my children have gone through so much in terms of death and loss and illness, starting with my cancer diagnosis in 2007. When they were 2 and 3 years old, they watched me transform from a healthy young mom who could easily fulfill all their needs into a sick, bald woman who spent a lot of time in bed. They watched me give myself white blood cell booster injections, and they watched me recover from my surgery, with drains hanging out of me. They watched me get better again. Then they endured their father's and my separation, trying to cope with now living between two households and understanding why grown ups behave the way they do. Now this--a baby that they never saw but hugged through my belly, a baby whom they had all these plans to play with, a baby for whom they drew pictures and made up stories--this baby they wanted--he was dead. Why? My heart broke when Chloe asked me, "Mama, can we have a baby that doesn't get sick and die?"<br /><br />It's been over a month since Veo's birth and death, and we're still feeling the loss. Chloe and Mylo have resumed their lives as usual, but now and then they ask me about Veo. They ask to see the tiny footprints the hospital gave us, they ask to burn some incense for him. The hospital gave us teddy bears to give to the kids, and the funeral home gave us a stuffed elephant--all as reminders of Veo. Every night the kids are with me, they hug those stuffies and remember their brother.<br /><br />Now, I sit alone in my apartment. The kids are with their dad. Anton is going to be by his mother's side as she takes her final breath. It is quiet, but I'm feeling very unsettled.<br /><br />Yesterday, I had a check-up with my oncologist. She wants to give me a full-body PET scan to make sure I am truly cancer-free. However, in order for me to have that done, I have to not be pregnant. And now, more than ever, Anton and I really want to have a baby. A fear struck me this morning as I thought about the PET scan: what if it shows I have cancer, and I have to go through chemo or whatever, and then I can never have kids again? I really want to say, forget the PET scan until we have the baby we want so much. But I know--I have to make sure I am good to go. <br /><br />I fucking hate cancer. It keeps getting in my way.<br /><br />Why can't we have this life we want so much--to be with Chloe and Mylo and their baby brother/sister, to live quietly and in the service of society? The last three years of my life have been devastation upon devastation. Yes, there has been so much that has gone right. I still have two amazing children, and I am in love with the most amazing man. Why, then, does life keep dishing out all these challenges that make me want to scream?Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com3tag:blogger.com,1999:blog-8617742255773003066.post-31988389531534061752010-03-31T15:48:00.000-07:002010-03-31T16:21:40.605-07:00Ups and DownsGood news: I tested negative for the BRCA-1 and -2 genetic mutations, which nixes my increased risk of ovarian cancer. However, a variant did show up on the results, but it's apparently one with a database so it's being tracked in other patients as well.<br /><br />Now the other news.<br /><br />We met with the OB/GYN last week for our monthly check-up. She said she talked to my plastic surgeon, who's insisting on a C-section so that she can assist in the repair to the mesh. That means that I have to have the baby at another hospital than originally planned, which means adding another OB/GYN to the team. Coincidentally, turns out that that doctor is the same one I had when I was pregnant with Mylo. Unfortunately, we later found out that she's on vacation for the whole summer, and our baby is due to be extracted from my shell in August. So now we're being juggled among doctors, but I'm sure it'll work out. I'm thankful that I have a team who's the best in Canada.<br /><br />Then we were presented with yet another challenge yesterday. I had just pulled into the school parking lot to drop off the kids when I got a call from the OB/GYN's office. They received the results from my serum screening (or Triple Screen, as it's called in the U.S.) and they wanted me to come in to talk about the results. My heart immediately sunk, as I knew from past pregnancies that this test was to check for risk of Down's Syndrome and neural tube defects (most commonly, spina bifida). I calmly took Chloe and Mylo into their classrooms, read a book with Chloe, and rushed off to go home. I contacted my family doctor and told her that I got the call from the OB/GYN, and she responded that she would get the results herself and get back to me. Within an hour, she asked me if I could come in and see her right away. I was struck with the same feeling I had when I got the call to come in and discuss the results of my initial biopsy two and a half years ago.<br /><br />Anton tried to remain calm, but I knew what was coming. Before she went over the results, she told us that these numbers aren't conclusive, and that the next step would be to get more tests done that would give us more definite answers. Then she gave us the numbers: 1 in 5 chance of neural tube defect, 1 in 25 chance of Down's syndrome. I accepted the news. I nodded my head. I listened as she explained all the numbers and terms to us on the report. She told us about the amniocentesis, which I knew about as well. And then I lost it. She consoled me and sat with us as long as it would take. We went home, exhausted, and it was only noon.<br /><br />When we got home, we Googled, talked, and cried. I just couldn't believe that this was happening. It's not so much the idea of having an "imperfect" baby that worries me; it's more of the idea that the baby might be born suffering. Neural tube defects are more than just spina bifida. Some cases leave the babies paralysed, mobility challenged, blind or deaf, or can even lead to stillborn deaths. I know--we shouldn't let our minds race before we get more conclusive results, but still, how can we reign all this in?<br /><br />A couple hours afterward, we went to the OB/GYN to talk to her about the results. She told us what we already knew, and then talked about the amniocentesis and genetic counselling. There was no question--we would do it as soon as possible. Just one problem: the mesh in my abdomen. How would the needle pass through that to get the amniotic fluid? The doctor was confident that the technicians could find a pocket that would allow the needle to pass through, but the idea of someone having to stab me multiple times with that needle before getting the right spot didn't sit well with me. So when I got home, I emailed my plastic surgeon.<br /><br />This morning, I got my appointment for the detailed ultrasound and the amnio--it's not until the end of next week because Anton and I are off to LA to visit his mother, who is very ill. So it'll be more than two weeks before we know the condition of the vaboose. Also, just as I suspected, the plastic surgeon wants very much to communicate with the people performing the amnio before they just go in there and try to do their thing. I'm happy that I was proactive enough to call her and inform her of the situation so that she could contribute her expertise to the procedure. It's quite difficult and stressful being someone whom medical professionals are not used to dealing with.<br /><br />Another call I made this morning was to my oncologist. You might wonder why, since this seems to be entirely a prenatal issue. Well, in my desperation to find a scenario that it's actually me who has something wrong, not the baby, I looked up alpha fetoprotein (AFP--the protein that indicates risk of Down's syndrome and neural tube defects), levels and any possible relation to cancer. Sure enough, increased levels occur in men and non-pregnant women when there is presence of liver, stomach, testicular, and ovarian cancer and lymphoma. This is wacky, but I really started praying that I have cancer and that the baby is okay because that would mean I could get treatment and get better, and the baby wouldn't be born with some incurable defect from which s/he would suffer. So I left a message for my oncologist to get back to me so we could see if that's a possibility.<br /><br />Also, I want to know if my cancer treatment, particular the trial chemo I had, has something to do with this. I was told many times that it's pretty possible that I'd go through early menopause cuz the chemo would fry my reproductive system. Obviously that didn't happen, but perhaps the chemo has been a contributing factor to this situation.<br /><br />I woke up this morning with the same feeling I had for the first month after I was diagnosed in summer 2007. I wondered if I had been dreaming--that this shocker was some kind of fear that my subconscious was dealing with. But then I saw the copy of the report on the couch, and I knew that it was real. <br /><br />I ask myself why things keep happening, why just when things seem to be going right, we get another life-changing challenge thrown at us. In my most cynical moments, I think that I'm the universe's favorite joke. In my most spiritual moments, I feel that the universe thinks I can handle it, that if there's anybody to lay these challenges on, it's me. And lucky me--I have a partner who's on the same wavelength as I am in terms of dealing with all this, and I have two kids who show me constantly that there is so much happiness and joy in life. After I told the kids that the baby might be sick, Mylo kept hugging my belly all night, "to hug the baby" as he says. This sounds so co-dependent, but I feel like I'm only as strong as the people around me, and the people around me, including my children, are the strongest. Being strong means being able to cry, and being able to tell those around you that it's okay to cry. Being strong means believing that no matter what, it WILL be okay.Cancerfuckingsucks.blogspot.comhttp://www.blogger.com/profile/00868065655971685338noreply@blogger.com4