Black Holes and Time Machines

This past week, of, as you likely noticed, total inactivity on the blog, I revisited a wonderful chunk of land on Galiano Island that I used to call, home. And Janice and I also went to Seattle for two blissful days of immense fun in the BIG city to the south complete with lots of retail therapy, waxing (I will say more, later), power walking, and unrepentant dining in fabulous restaurants. It’s hard to imagine anything more splendid after a July and August from hell, especially as we slide towards the terrain of the unmentionable (school starts anew)!!!

The land on Galiano is very sunny and stretches langourously across a fertile valley with lots of fruit trees and berry bushes. Our host, Sz, provided lots of work-fun chores, like picking apples that had fallen from the trees and needed to be redistributed outside of the deer fencing to feed the local deer population. I also picked copious quantities of blackberries and made a delicious berry-peach sauce for the vanilla ice cream that appeared after dinner one night. All I can say is that nothing tastes better than that fresh berry sauce. Nothing. We hiked, walked by the ocean at Montague Bay, which is stunningly beautiful, read for hours uninterrupted (OMG, I had forgotten just how good that is), didn’t check email or surf, bumped into old Island friends and got updated on the local gossip… Good shit.

I noticed several things about myself over this 7-day period that seem worthy of mention. And it’s all about the BC/AC phenomenon. Yes. That would be, Before Cancer and After Cancer. I am not at all sure that, After Cancer is the right moniker, since in fact, there probably is no after to cancer’s ubiquitous death grip on life, but you know what I mean, here. I just mean, after the tumultous period of active treatment.

So my AC self is unsure of herself on some fundamental level in social situations. Now if you know me, you could say, “Oh come on Mary. That’s nothing new.” Aren’t friends great!!! Yes, I have never been a social butterfly who glides effortlessly around the room blabbing. Ok. I know that. But I am dealing at present with a whole new kind of social malaise that has something to do with the fundamental ontological gap between me and folks who have not lived with cancer. We inhabit different worlds, you and me. And I am not sure how to cross that barrier. Maybe it’s the newness of the trauma. But I do know that I am currently metabolising something that feels like a species of “recognition failure”. That is to say, I am not sure who I am, AC, nor how it is that I would like you to recognize me in this transformed state. There is something fundamentally different and distinctive about life AC that I need you to know about and to acknowledge, and I just don’t yet know how to tell you what it is. Fuck that’s vague. But it’s the best I can do, today. And like I know that it matters that I’m queer, I know that it makes a critical difference that my life has been forever altered by cancer. That I have lost body parts to cancer is just the starting point of a discussion about transformation. And contrary to some others who write about cancer, I don’t choose to frame any of this discussion of change in positive, life-enhancing discourse (cancer, the gift).

The second thing that I have noticed about myself is that I experience sudden, intense, almost random bouts of terror. Susan Sontag, writing about her breast cancer experience, put it like this:

“Panic. Animal terror. I found myself doing very primitive sorts of things, like sleeping with the light on the first couple of months. I was afraid of the dark. You really do feel as though you’re looking into that black hole.” Susan Sontag, Illness as Metaphor

The terror produces a kind of epistemic and locational vertigo. There is no solid ground under my feet and that most solid of cartographic indices, time, is spinning out of control like the needle of a compass under a magnet. My entire relation to time has been altered. I think it may have something to do with the peculiar use of time that prevails in cancer discourse where prognostic indicators and treatment effects are only every reported in Disease Free years and Percentage Survivors after X number of years. If you read much cancer discourse, you assimilate thousands upon thousands of estimates of Cancer Time - how many lived or how many years might you expect to live. It’s very weird. I blogged about this shortly after the mastectomy, in Living in Prognosis. This is the least read entry in this blog, btw, which I think is strange because it is one of the best written, IMHO.

 

Death by Numbers, or, the Patient From Hell

“We found that elevated pre-operative serum marker values were correlated with early replapse and death from disease. Possibly, the release of tumour associated antigens at the time of diagnosis proves blood supply respectively vascularization of the tumour and by consequence the possibility of already existing micrometastases and bad prognosis from the beginning.” F. Ebeling et a;. (2002). Serum CEA and CA 15-3 as prognostic factors in primary breast cancer. British Journal of Cencer, 1217-1222.

I am reading a really cool book at the moment — The Patient from Hell, by Stephen Schneider, a professor of Biological Science at Stanford who has documented his extraordinary and highly atypical strategies for informing himself at an expert level about a rare form of cancer, and using that knowledge effectively to significantly alter his medical care. Some days I try to be the patient from hell. I read all the information in my medical charts. I follow up by reading articles in the medical journals. I formulate questions based on my research and try my best to articulate a reasonable dialogue with doctors. It kind of works, sometimes. And it often falls flat. Schneider’s characterization of medical reasoning helps to shed light on several key factors that explain why it fails. Basically, doctors are trained to follow particular protocols, and a line of reasoning that isolates one or two findings in an If, Then logic. Add to the deficiencies in reasoning produced by this kind of linear thinking is the simple but devastating impact of economics on medical protocols. The kind of care you get is based on a cost-benefit analysis that is modeled on whole populations. There are particular shortcomings to this form of reasoning. Like, that it could kill you.

I have not been able to rest easy with my breast cancer surgeon’s decision that I should not see an oncologist following my mastectomy, and in the same vein, that I should not have any form of adjuvant therapy (like Tamoxifen, or radiation, or chemo). I am not comfortable with the biopsy finding of micro-invasion. That tells me that cancer cells could well have escaped the confines of the ducts. Yesterday, a new piece of information on my diagnostic profile blew me away — the micro-bomb. I was being a good “patient from hell” and reading my chart while waiting for my family doctor. I learned in a letter from my initial gyne surgeon consult to the internal medicine doctor who was in charge of my case while I was resident at UBC Hospital, that at the time of my breast cancer diagnosis, my CA 15-3 cancer marker was elevated, whereas it had significantly decreased post-operatively. My breast cancer surgeon had never disclosed the fact that CA 15-3 was elevated at diagnosis. And the implications are chilling.

CA 15-3 is one of the “tumour marker” blood tests that are typically done at the time of diagnosis. CA 15-3 is a cancer antigen - a protein that is shed by breast cancer cells. There is a lot of research on the prognostic value of levels of pre- and post-operative CA 15-3, and it’s not at all good news, in my case. A 2002 study reported in the British Journal of Cancer by Ebeling and his colleagues shows that amongst early breast cancer patients, “elevated pre-operative serum marker values were correlated with early relapse and death from disease.” Shering and colleagues (2000) report that amongst early stage breast cancer patients, “the probability of disease free survival at 5 years was 44% in patients with high CA 15-3 levels compared with 65% in patients with low CA 15-3 levels”. YIKES!!!

I know as a somewhat educated (in this domain) person that it would be erroneous to make huge assumptions based on one test result, but imagine not having known this upon making the decision to pursue no adjuvant therapy for breast cancer. It sure doesn’t make sense to me. Now what? Arrange for a second opinion, collect up copies of all the test scores, make a list of the key questions, go back into cancer world, keep fingers crossed, and so on, and so on… That’s my hope — to be another patient from hell who survives and thrives.

 

Post Treatment Blues

A big hello to all the kind folks who have read and commented on my blog over this summer from HELL. I have been very reluctant to write anything in this space for the past week or so because I am basically very depressed, tired and frustrated with the multiple chronic health problems scenario — layered on top of cancer — that now defines the grain of my everyday life. There is, also, a very common period of intense depression, anxiety and mourning that follows closely on the heels of aggressive treatment — like, oh, maybe, two surgeries in a period of 5 weeks. The pyscho-babble folks call it, Post Treatment Blues. Basically, your soul catches up with the realities that have befallen your body that the very intensely helpful trick of DENIAL has been pushing off to the side so that you could actually withstand treatment. Then you crash. And there is nothing interesting or sexy about this struggle. It’s just brutal.

My gastrointestinal system has been decimated with pills and drugs over the past two months, including about three weeks all together of opiates, eleven days of intravenous antibiotics and countless other shit. Acid billows up into the back of my throat constantly, making me cough and go hoarse and nothing I do stems the flow. Then there’s the diverticular disease they found when I went into the hospital a couple of weeks ago. There is almost nothing left that is safe for me to eat between diverticulitis and GERD (reflux). And if I don’t keep the diverticulitis under control, the only option will be a very nasty and risky bowel resection surgery. I don’t actually even know how to think my way through ever going on vacation again under these circumstances, or even how to get on a plane and go to a conference. Then there’s the breast seroma from the mastectomy that has not resolved. I could go on… See what I mean. There’s nothing interesting about this at all and I can’t figure out how to write about anything else because dealing with all of this is the sum total of my daily life.

Blogs are odd public spaces. Maybe I am from the wrong generation to feel entirely comfortable to put the minute details of my struggle out into the airwaves. Or maybe I am just worried that it could seem like a passive aggressive call for help, or for encouragement.

I need, if only, to figure out what the hell I am living for other than to cope with personal health catastrophic failure.

 

Can you come home, again?

I am home, again. “What’s home got to do with it?” ask Biddy Martin and Chandra Talpady Mohanty, a brilliant feminist, critical race theory duo. Good question. Can you come home, again? I am uneasy and remain in what I think of as, “Code Blue” mode. High alert. What could go wrong, will go wrong. Can you rest easy? Can you ever relax again? Can you trust your body? Martin and Mohanty ask us to question the politics of comfort and of some idealised notion of origin connected with the construct of “home”. This is hardly relevant to my present situation, where surely, after having endured two major surgeries in 5 weeks, and two encounters with the “medical cancer complex”, I can presumably afford to “take it easy”. I can let go, right? I suppose that just one of the tasks at-hand is to relearn a relationship to my body as something other than a disaster area - a site of catastrophic failure.

Perhaps I should start with the good news. I spent 11 days in the hospital awaiting surgery that quickly escalated into a scenario where ovarian cancer was high on the list of possibles and ended up with a more or less clean bill of health and a much less drastic surgery. Or perhaps I should relay an adequate account of the events of the past 11 days spent in two of Vancouver’s hospitals and dispersed across a veritable phalynx of doctors, surgeons, nurses, caregivers, friends, family and others. It’s hard to know where to start with this new episode. “Another chapter for the book” was my maternal grandmother’s favorite phrase deployed in order to decompress a tragic event and re/present it as simply another event in a busy life. Maybe that is how I should think about the recent spate of unfortunate events - another chapter for the book.

How about a simple chronology of events, as a way to begin.

July 3 Bilateral Mastectomy

July 20 Follow-up appointment at BC Cancer Agency for mastectomy, where unexpectedly, I run into my gyne oncology doctor, Dr. M, in the hallway - I had gone to see Dr. M for many years of colposcopic examinations of the cervix as a monitoring procedure because my mother had been given DES when she was pregnant with me, and DES daughters have a high risk for cervical cancer.

July 21 Notice left ovary pain for the first time

July 27 Left ovary pain has been increasing all week, so I call my GP, who recommends that I go to UBC Hospital Urgent Care in case it is a ruptured cyst. UBC Urgent Care is amazing - great doctors and diagnostic technologies. I get a CT scan and it shows a huge left ovarian complex cyst (10.5 by 8.6 cm, or grapefruit size) as well as a diverticular attack in the colon. I get a couple of prescriptions for antibiotics and leave expecting to consult back with my GP about the cyst. The pain gets worse over the next two days, as well as omnipresent nausea.

July 29 I go back to Urgent Care because I am feeling extraordinarily awful. The cyst pain is not getting better and the nausea is considerably worse. The doctor who is on-call in the Hospital recommends admitting me. I think that she is unusually kind and attentive because she is a school buddy of my friend B, who accompanied me back to Urgent Care. Dr. C is very concerned about the shape of the cyst (irregular/complex) and the link between ovarian and breast cancers. There is much talk about how to get in to see a surgeon about the cyst sooner than later. The tone, it is impossible not to notice, is getting that dire quality that stretches itself over the scenario like a taut netting. It’s disconcerting. My gown is not coming off this time. I am being wheeled into a hospital room. I have a tag on my wrist. I am here to stay.

July 29-August 6 I am resident at UBC Hospital where the amazing Dr. P tries every known combination of pain and anti-nausea medication to control my symptoms. He is one of many incredibly kind people who treat me during this period. Exactly as in the breast chronology, three days later I am let out of the hospital for a few hours to go to VGH to see the gyne oncological surgeon, Dr. McA. She is no nonsense about it all and schedules me for surgery August 7. The senior surgeon who will be overseeing the operation is my gyne oncology doc who I had run into at BC Cancer Agency, Dr. M. I really like Dr. M. I can’t believe that I am heading into another surgery where cancer is the overly determined backdrop.

August 6 I am transferred from UBC Hospital to VGH. I am on the gyne oncology surgery ward. It’s a very serious place. The nurses are very matter of fact about everything and not at all — what’s the right word here — kind? They do their job competently and don’t actually want to know how you are doing, when they ask “How are you?”. I have an amazing team of friends who come to visit from morning until night. They make me laugh. They go out and get broth and jello when the cafeteria brings the wrong meal and I am not allowed to eat anything but fluids. They push for me to get medication when the pre-surgical bowel prep meds I had been given created an explosive reflux problem that was burning a big hole in my throat. They give me hugs and take funny pictures with cell phones. My friends cradled me with love and care. The evening of August 6 the surgical resident, Dr. S, came to talk to me about the surgery scheduled for the next day. The dialogue was surreal. She walked me through a procedure where the surgeon biopsies the cyst and sends a frozen section to pathology for immediate diagnostics. While they wait for pathology’s response, the surgeon would remove my pelvic lymph nodes on both sides. OMG. At this point in the description of the forthcoming events I was freaking out. WHAT?!? Why start harvesting body parts before they even know whether or not the cyst is malignant? I start playing “Let’s reorganize this surgery” with the resident. How about they wait until they find out about the frozen section before they begin organ removal? I am emphatic that I must now revize the Surgical Consent Form. Sanity is disintegrating all around me even as I very rationally talk about the procedure with the resident, who reassures me that Dr. M will visit me before the surgery tomorrow and that I can “discuss this” with her. F*CK.

August 7 My surgery is supposed to be at 2pm. It’s a long day. I haven’t eaten now for 48 hours. Dr. M did come and see me and agreed to hold off on removing body parts until seeing the results of the pathology. I am feeling a little more confident. I am also terrified. I have a lot of pre-surgical angst. Just before they wheel me into pre-op a nurse comes in and tells me that the medical student has ordered an anti-coagulant shot. I can’t believe my ears. Who the heck would expect a shot of anti-coagulant just before an operation. I imagine bleeding to death on the operating table just because I foolishly agreed to a shot ordered in error by a fledgling doctor. So despite my intense desire to be a “good patient” I refuse the shot. Down in pre-op the nurse there tells someone else that I had “refused” the Heparin. I try to locate a doctor who can tell me whether or not I should actually be getting the shot. Everyone asks me the same litany of questions about allergies as if no one person shares their information with another and there is no central record keeping. It’s a zoo. We wait. And we wait some more. And my pain level increases intolerably because I have had no pain meds for hours now. There is someone else in pre-op also scheduled for the gyne oncology team, who I have come to think of as the “Dream Team”. And at 2:30, my time, the other person gets wheeled in. Dr. M tells me I might not have my surgery today if the other procedure takes too long. And we wait some more. I meet my anaesthetist, who turns out to be the same wonderful guy who was my angel of sleep for the mastectomy, Dr. B. How weird is that? Two surgeries within 5 weeks, and I get the same brilliant and kind anaesthetist, who goes to great pains (ha ha) to clarify for me the critical difference between “anaesthetist” and “anaesthesiologist”. Cool. Dr. M shows up and it’s time to wheel me into surgery at about 5pm. I try to chat with the OR folks for as long as I can to put off the “procedure”. I hate the”going to sleep” part of it all, cuz the “waking up part” is too soon after that moment, and then, the pain comes.

But wake up I do, and as soon as I can focus, look down to my abdomen to see what kind of incision I have — laparoscopic (maybe not cancer) or vertical abdominal (cancer for sure, all parts out). WOW. It’s laparoscopic — just three sections of steristrips. A nurse comes by. Someone tells me that they didn’t take out anything other than the cyst, which they think is benign. Only the pathology report will confirm this critical detail, but apparently with cysts, appearance is a reliable diagnostic tool. They didn’t even bother sending off a frozen section to pathology during the procedure. And it wasn’t, in the end, an ovarian cyst either. A fallopian tube became walled off and cystic, and expanded to grapefruit size. The sheer weight of the cyst and the fact that it became separated from the ovary and was swinging around and pressing on my colon and bladder is what had produced all the pre-op pain.

My friend P asked me if I “felt like I dodged the cancer bullet for the second time”. And oddly, I don’t. Maybe I should feel “lucky”. Perhaps in time all of this will settle somewhere, and might exist as some version of my grandmother’s “other chapter for the book”. But for now, I just want to feel the comfort of being “at home” - at home in my own body, in my domestic space, in the world. And once again, I am bowled over by the kindness of strangers — all the amazing people in the medical institutions that I travelled through who went out of their way to be helpful and empathetic — and by the kindness and generosity of friends and colleagues. SO much love.

 

Life stuff…

Since I want to enjoy the sun and my family today, this entry will have just the basics with no frills, no theory, and no clever commentary. So I haven’t updated my blog because for a week now, I have been in hospital. Yeah, I know. It’s f*cking unbelievable. But that’s also just the way it is. I am currently at home for a few hours on a day pass. Like a good inmate. Then, back to the institution. A week ago I ended up at the ER because I had been trying unsuccessfully to cope with intense abdominal pain for about a week. Something sure wasn’t feeling right. And it turns out that is because I am sharing my abdomen with a 10.5 by 8.4 cm mass on my left ovary, and maybe a diverticular attack as a chaser. The higher risk factor that I now carry for ovarian cancer pushed me to the top of the list, more or less, and I have been fast-tracked for surgery on Tuesday, Aug. 6. I know and like the surgeon who will be operating Tuesday. She may elect to take what few bits are left out (both ovaries and fallopian tubes), or I may just lose the mass and one ovary. It all depends what has chosen to take over my body. Many of you have helped to pass this time joyfully and have been incredibly supportive. I love all of you, whether you are one of those folks or not. People in the hospital have been extraordinarily kind. I am terrified and also not alone, so it’s almost bearable. I will have more to say when I get back. That’s a good motto I guess — yeah — more to say when I get back…

 

Support

Telling people about cancer is extraordinary — by definition — extra/ordinary. There is never a right way. Some people are really weird and it’s hard to forgive their reaction, which my wonderful therapist, Dale, aptly characterized as a form of “manic defense”. On the other had, some folks are amazingly courageous and forthright about their response to the unexpected revelation. It’s not that different, in some ways, from telling people you’re queer, except for the fact that most people are WAY more freaked out by “cancer” than “queer”. I am not exactly an expert in coming out as a cancer — A cancer what? — a “cancer patient”?, a “person with cancer”? — having only been living with the diagnosis since June 8th.

What I have learned so far is that in about 2 seconds I know everything there is to know about whether or not I will be able to co-exist with the person - at least in this, the most active phase of “treatment”. There are some clear lines of demarcation. Any attempt to tell me (a) what it means to have cancer, as in, “Cancer is a gift” or (b) why I have cancer, as in, “I know why you have cancer. It’s the toxicity in your family.” are immediate grounds for exclusion. Most folks struggle with their fear, and it’s good when they just get that anxiety right out into the open. People tend to be freaked out by the fact that there is precious little they can do to help me out with a potentially fatal problem. And they can either co-exist with that vulnerability, just like I have to, or they can’t, in which case, they will quickly slip away from the tangible landscape of my quotidian existence. I am good with it all. Most people want to know, concretely, what they can do. They want to be supportive.

Ten days before my surgery, I went to my brother Tom’s (and his partner) Marg’s wedding in Toronto. It was a tough thing to do - maybe tough for all of us. I was newly diagnosed and facing surgery, and they were celebrating. All I can say is that Tom and Marg and their friends (Hi Peter, Rick, Jorge, Willard and Ernie!) were amazingly supportive. No one talked about my cancer much, and when they did, it was openly and frankly and not in hushed whispers. One of those friends, Brenda, from Saskatchewan, emailed me a few days ago and told me a really cute story. Brenda bought some pots for her garden, and new plants, just the day after my surgery. She talked to the plants and asked them to stay healthy and beautiful, “for Mary”. That is, for me, a beautiful and touching story. Someone I barely know, thinking positive thoughts and taking action and having the guts to reach out across the social awkwardness that plagues us all to share their kindness. That helps. And there are so many examples I could add here, of support in this awful time. Thanks to all of you - You know who you are!

 

Living in Prognosis

It’s amazing to read something that seems to speak directly to you when you are in the grip of an extraordinary trauma. I can imagine getting really flaky, which I could not have envisaged pre-cancer. Yesterday my friend Stuart gave me a paper by Sarah Jain called “Living in Prognosis: Toward an Elegaic Politics” (Representations, Spring, 2007). It’s a funny thing, coincidence. I met Sarah Jain last year, having exchanged articles by email sight unseen, as folks commonly do these days. And then I discovered that another new email friend, Kris, from the University of Chicago, knew Sarah Jain, as does Stuart. How odd is that? And now this incredibly smart woman who teaches at Stanford and whose work I have been getting to know is writing about uncertainty, risk, discourses of temporality and breast cancer. Wow. I am almost ready to start talking about angels.

Everyone wants to know when I will get my pathology report and it concerns them greatly that (a) I am not sure, and (b) I don’t seem to be motivated enough about reading the analysis of the evidence from the diagnostic work on the breasts following the mastectomy. These folks who are concerned about my apparently lackadaisical attitude don’t have cancer. Well let me correct that. They are not “living in prognosis” - to use Jain’s elegant formulation. Prognosis is a very inexact set of practices. The reassurance that my well-intentioned friends think will be provided by a set of statements about the tumour and the presence of absence of cancer cells in the two lymph nodes removed in the sentinel node biopsy is actually a pipe dream. In fact, someone working in a lab will look at slices of the breast tissue and the lymph nodes, and provide a set of descriptive statements that, as a collective set of facts, will link up with another set of aggregated probabilities. The relationship between the population statistics and what the pathologist notices, and between these two sets of relations and treatment options - well, it’s just a big huge open field of uncertainty.

Tumour size, single or multi-focal, cells in the lymphs or not, estrogen and/or progesterone positive or not, age on diagnosis, micro-invasion or not — yes they all translate into slots in an actuarial chart — but no, there will be no moment of clarity and comfort in this clinical picture. Chemotherapy yes or no, radiation yes or no, hormone therapy or removal of the ovaries or both. Any and all are possible elements for my treatment and I am rather glad that at this point, today, as I am riding the waves of post-anaesthetic nausea, that there is a lot that I still don’t know.

 

Confronting the Unimaginable

Today I will lose both of my breasts to a double mastectomy. This is, without any doubt, the most difficult day of my life. I don’t think that I am afraid that I will hate how I look without breasts, or anything quite so mundane. And in some ways, its odd that the loss is what I fear so deeply when really, the only thing that matters in this scenario is whether or not the cancer has actually spread, setting up the scenario for metastasis. No, I think it has something to do with the impending reorganization of the topography of my body. I have inhabited this body for 48 years, and although I didn’t ever feel like I was particularly fond of my breasts, they are part of what Miller called the “temple of the familiar”. My body. My shape. And all this is about to change profoundly. It feels like I am about to participate in some kind of enforced phenomenological reorganization that could only ever come much too quickly. I could never be ready for this. I am terrified.