Miracle Resolution Imaging

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.

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.

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.

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!

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.

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!

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.

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.

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.

42

It'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?

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.

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.

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.

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.

Future Perfect Tension

I 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.

April 15th (and thereabouts)
2008. Bilateral mastectomy and tram-flap.
2009. (Discovery of first husband's infidelity and ensuing separation.)
2010. Birth/death of son Véo.
2011. (Anticipation of birth of daughter Moxie in two weeks.)
2014. (Grieving father's sudden death from cancer.)

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.

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?

Then there was that CT scan I had and the words on the results: "This is suspicious for adenocarcinoma." Lung cancer.




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?




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.

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.

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.

Cancer is a Stupid Bitch

If 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.

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).

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.

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.

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.
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.
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.

Stats, Research, Conclusions and other Bullshit

As 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.

Since I've written my last post a few months ago, here's what has been going on with me medically.

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?

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.

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.

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.

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.

Fuck. That.

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.

What Being a Cancer Survivor Means to Me, 8 Years Later

8 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.

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.

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.

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?). 

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.

That's what being a cancer survivor means to me, 8 years later.

*written in honour and memory of my friends who have moved on

Wanted: More Moxie

Photo by Pia Massie

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.

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.

Being a young adult cancer survivor means a lot, and the month of thinking about what that means officially 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.

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.

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.

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 want to do. And when I can manage to get out of bed and do it, it's nothing short of a miracle to me.

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.

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.

So my wish for October is to have more moxie. Always. That's what survival is.