Update: No referral processed yet, so no MRI today. Can't say I'm sad about that, honestly -- the day is already pretty busy, and it's nice to have this block of time open up. But still, referral system frustrating as heck. Argh.
Update: No referral processed yet, so no MRI today. Can't say I'm sad about that, honestly -- the day is already pretty busy, and it's nice to have this block of time open up. But still, referral system frustrating as heck. Argh.
So the basic gist: the doctor found some disease in mommy's cells that made a little lump (she knew about red blood cells and white blood cells, we were informed). And the hospital was going to give mommy medicine to fix it, but it was going to take about six months and a lot of hospital visits, so Aunty Kat might be babysitting more often. Mommy was probably going to be extra tired, and the whole family would need to help out. Kavi seemed worried for a moment at the beginning (I suspect she might have started worrying about whatever was going on previously, because as I said, smart cookie), but quickly calmed down entirely.
That's as far as we went for now; if my hair starts falling out with the chemo (likely), we'll talk about that then. And the surgery discussion can wait too. Haven't discussed any of this with Anand yet, but he's only 5, and is mostly oblivious to anything that doesn't involve Minecraft right now. And that's where we are.
Dear reader, I bought the socks.
(I won't make you look at all of them, but here -- these are particularly fairy tale-ish.)
People have been saying a lot of nice things to me the last two weeks. Apparently, a cancer diagnosis is the perfect spur to remind people that they like you, and then they may rush to tell you that, which is a bit disconcerting (since hey, very positive prognosis, I'm almost certainly not dying even a little bit!), but overall still lovely, because who doesn't like being showered with affection and praise? It's a wonderful counter to the more sucky moments.
The praise occasionally makes me a bit uncomfortable. People have really liked the cancer log, which is great, and I'm going to write something more soon on why I think it's working for me and others, and how blogging / memoir in general can be very helpful in times of stress, etc. But will save that for now. What I'd like to talk about now is the bit where people praise me for handling all this with grace.
Part of that's an illusion, you know. I have mostly been writing in the morning, in my calmer moments. Last night, I came home after a busy day, made dinner -- and then just sat in the living room for a while, kind of poking at the internet, unable to motivate to get up and do anything.
Sometimes, it all hits me, the fact that even if I'm probably not at much risk of dying, I do now have a chronic illness -- after the somewhat unpleasant five months of chemo, there will be surgery and I will likely lose my breasts (suddenly, I'm imagining a comedy skit about lost breasts -- breasts? breasts? where did I put the dang things??), and then there may be radiation, and after all that is done, there'll be 5-10 years of hormone therapy, and regular scans to make sure the cancer hasn't come back, and that's enough to make anyone seriously bummed out. So sometimes I get seriously bummed out, but I don't tend to write much about it because, y'know, it's boring. When I come up with interesting things to say about it, I'll let you know.
But putting that aside, yes, I've mostly had equanimity about the whole thing. There are a lot of "why me?" moments, but I think this is where my being strong-agnostic-almost-an-atheist is actually of tremendous comfort. (And now, this takes a hard left turn into religion, which I'm betting isn't where you thought it was going.)
I've been privileged in my life until now, lucky. If I'd stayed a Catholic, I might have phrased it as saying that I have been blessed. My life has been full of blessings, alighting on me without my earning them. Kind parents, some brains, enough money, many years of physical and mental health. So many blessings, and if I'm going to ask "why me?" I ought to ask it for all the blessings too.
I was twelve when I ran headlong into the Problem of Suffering. That's what the Catholics called it back then, anyway -- the question of why, if God is omniscient and omnipotent, he would allow horrible, painful things to happen to babies. I was entirely unsatisfied by the nuns telling me it was part of God's plan and that we weren't capable of understanding it; maybe I was just a smart-ass kid and too full of myself (maybe I still am), but that explanation just wasn't good enough.
If I'd had a few Jesuits around to argue with back then, maybe they could have kept me in the Catholic church a few years longer -- those particular nuns weren't up to the job, and even though my parents coerced me into being Confirmed at thirteen (I chose Kateri Tekakwitha as my patron saint, the Native American girl who refused to marry the man her father picked for her), I was already long gone from the church in my mind.
Even aside from the Problem of Suffering, exposure to other religions meant that I couldn't see any good reason to be Catholic specifically, except that I'd happened to be born into a Catholic family. And later, I learned about colonization -- if the Portuguese hadn't come to Sri Lanka, my great-great-something-grandfather wouldn't have converted from Hinduism to give his kids access to the Portuguese schools and better job prospects. I would've been born Hindu and grown up worshipping entirely different gods; my indoctrination into Catholicism was a historical accident. So it's been a long, long time since I've been able to buy into any specific organized religion.
All of which means that now, with cancer knocking on my door, I don't have to wrestle with the question of why God did this to me. This happened to me because it was going to happen to someone, and when you roll the dice, sometimes it comes up snake-eyes. It is, oddly, a great comfort to have the answer to "why me?" simply be "why not?" (And there are larger questions about whether cancer rates have been rising, and is it possible that some environmental factor has contributed to this, etc. and so on, but let's table those for now.) There's no one to be angry with, no higher power to yell at, to blame. I got to skip over a whole emotional process, because it doesn't apply to the non-religious.
People have asked if I mind if they pray for me. And here's the bit that might surprise you -- I love that people want to pray for me. Because even if I think the Catholic god is highly unlikely, and the Hindu gods ditto, I am not completely against the concept of a higher power. I think the universe is still beautiful and wondrous without gods, but I am not immune to the hope that there is something more than what we have discovered thus far. This is why I can't be a strong atheist -- I'm never going to be sure that we little humans know all there is to know.
So agnostic it is, and agnostic it will be, and if there is Someone out there listening, maybe even Someone with a vast plan beyond my comprehension, then I love that people are talking to Him/Her/It about me. I mean, personally, I couldn't worship a supposedly higher being that would be actually influenced by prayers, because how unfair would that be? That I get to have all these people intervening for me, and so many people don't -- if there's a God who is actually good, they had better not favor me over someone else in need. That's just not right, folks.
But all those prayers, all those good wishes going out into the universe? They're comforting, even if no one is listening (or if Someone is listening but unlikely to be swayed). In the last two weeks I've felt just surrounded by this immense sea of affection. And beyond the people I directly know, I know there are good people the world over who are troubled by suffering, who are sending their kind thoughts into the universe, wanting better for me, for everyone.
I may not believe in god, but I do believe in people. People are amazing. And sometimes we fall down, and sometimes we are not our best selves, and sometimes we sit in a dark room and rage and even lash out at the people who love us best. But overall, I think human beings have a tremendous desire to do good, to be good. That's my version of god -- all those little human souls, burning to make the world better, for themselves, for their loved ones, even for total strangers.
So pray for me, if the spirit moves you. Pray for us all. Think good thoughts and send them out into the universe, and maybe that will put you in the frame of mind to be kind to someone who's having a rough time and is stumbling as a result, lashing out a bit more than they ought. If there isn't a God, or even lots of little gods, maybe we can be that force of good in the universe, for each other. That's what I believe in.
Okay, this one is just fraught. Here's the thing -- my family are all doctors, right? My dad's an internal medicine doc, my sisters are pulmonary / critical care and infectious disease, my brother-in-law is an ENT, one of my best friends is a pediatrician, her dad is a radiologist, and I've got a few more cousins who are doctors too. It is an embarrassment of doctors, and it's sort of funny that none of them are oncologists, but they ALL are willing to give extensive medical opinions and show my case to their oncologist friends and deluge me with information. With love, of course.
So, one of the opinions that was clear pretty much across the board is that if they were undergoing treatment in Chicago, they'd go to either Northwestern or University of Chicago. Those are the most advanced, shiniest, researching-est university hospitals, with the fanciest doctors in the area. Okay. They sent me a bunch of names.
But as it turns out, breast cancer treatment is fairly straightforward right now, according to a national protocol, and my type is the most common type. So there's not nearly as much urgency as there might be to getting the most cutting-edge care, and several of my family members said that it was worth prioritizing a medical team I was comfortable with and someplace close by, because the treatments would be fatiguing, and if I were dreading an hour commute each way, I was not going to want to go and get treated. I mean, I'd go anyway, because I am dutiful like that, but it would be adding misery, probably to no good purpose.
A friend of mine, Anne Marie Murphy, is Director of the Chicago Breast Cancer Quality Consortium, a project of the Task Force that is a collaborative of healthcare providers dedicated to eliminating racial health disparities in breast cancer in the Metropolitan Chicago area. She recommended a doctor at Loyola who she said was just excellent, top of the game. So I put that doctor on the list -- Loyola is a teaching hospital too, and one that's much closer to me than U Chicago or Northwestern. It's about 15 minutes' drive away. I also decided to try the place that diagnosed me, the River Forest Breast Center, and their oncologist / surgeon.
Now, the River Forest Breast Center is cozy. I went there first. It's a little set of small buildings nestled right between the Whole Foods complex and the Jewel complex on Lake, about an eight block walk from my house. I've had a bunch of appointments there in the last two weeks, and going there and stopping for groceries on the way back felt reassuring. Their rooms are nice and clean, their staff are courteous and kind; it doesn't feel particularly high-end, but it feels good and comfortable. I really liked the oncologist I met with, and the surgeon and I did have bit of a political disagreement, but I don't really care about that -- her main job is the meticulous cutting and I have a recommendation that says she's excellent at that. I was comfortable going with them, although I was somewhat thrown by the MRI -- it was done at their affiliate, West Suburban Hospital. Here's the politically difficult part.
West Suburban is in Oak Park, but it's right at the eastern edge, the Austin border, with a primarily African-American patient base, and I would guess, mostly poor patients. When you walk in, you can tell the hospital doesn't have a lot of money -- the decor hasn't been updated in decades, and while everything is clean, it's dingy and worn. Everyone was super-nice, but when I needed a copy of my MRI to take to Loyola for the second opinion, their CD burner was down, and it them three days to get it repaired. That was frustrating (necessitating multiple extra trips out there) and just unsettling. They only do breast MRIs on Fridays, because they only have a female MRI tech that day. Like that.
I know doctors who work at that hospital, and they're great, conscientious people, and undoubtedly excellent doctors. I'm guessing they do their best to keep up on their research and provide the best care to their patients. But I also know, from seeing the difference between how adjuncts and tenure-track faculty are treated, that money matters. Someone who's being paid significantly more and allocated time in the workday to keep up with their research is much more likely to be *able* to keep up, regardless of their passion for the field or for their students/patients.
Then yesterday I went to Loyola. And it was bright and shiny and white and clean, a huge teaching hospital complex, stretching for many blocks, with schools of medicine and nursing attached. I walked in and I immediately felt comfortable. Some of that was, I think, that I spend most of my days in a teaching institution, and there's a certain feel to that kind of place -- the rush of harried students hurrying by, the spaces dedicated to research, a very mixed demographic in terms of race and age and class backgrounds. It's not cozy, but it's the kind of place I feel very much at home.
And then I met with the doctors, and it quickly became clear, though they were tactful about it, that they didn't consider the West Suburban MRI machine quite up to snuff -- if I went with them, they'd want to repeat the MRI with their own equipment. And they had me do bloodwork, which the other doctors hadn't, and they hunted down records of my 2011 breast reduction to compare, ditto, and they're ordering a bone scan and a CAT scan. All of which can be done on Tuesday and Wednesday next week, instead of waiting 'til Friday, because they have the resources.
Possibly these other tests and records aren't necessary -- probably they aren't, actually. My cancer is, as I've said, the most common sort of breast cancer, and the treatment protocol is standardized, and they're probably going to end up doing exactly what the other practice would have done. But they're being much more thorough, they're consulting with each other and acting in the way I'd expect from an experienced, research-oriented team. They feel like academics, and that's a feeling I'm very familiar with. So I'm going with the Loyola team and hospital.
Now, I really don't want to knock the other practice. I've gotten recommendations from people who were treated there and loved it, and I honestly think it would've been fine. And there's a level on which I hate that the place that has more money and spends more money is the one I'm choosing to go with. It should not be this way -- every American should have access to equally good hospitals, equally good doctors, equally good MRI machines, regardless of ability to pay. Patients in poorer African-American neighborhoods should not be stuck with understaffed, under-supported hospitals -- when we see the disparities in health outcomes and survival rates between different racial groups, we should be focusing the microscope right there, on the money.
"There is a large and growing disparity in breast cancer mortality between Black and White women in Chicago. An African American woman in Chicago is more than twice as likely to die of breast cancer compared to white women; but it has not always been like this. In 1980 there was little difference in death rates between the two groups. While a decline in breast cancer deaths among White women is a notable success in the fight against the disease, the simultaneous increase in the death rate among Black women implies that advances in breast care over the last 28 years have benefited some, but not all." -- Breast Cancer Task Force
One way to address these issues is through projects like Anne Marie's, the Metropolitan Chicago Breast Cancer Task Force. They take donations, small and large. I'll be sending some money their way.
Last thing -- I have HMO insurance. We were kicking ourselves, a little, that we didn't switch at some point to the more expensive insurance, the one that would let us go anywhere we wanted. I'm not sure if I *could* have chosen U Chicago or Northwestern; in the end, I didn't check. Thankfully, it does cover Loyola. But that's frankly a scandal too, that every American doesn't have the simple ability to go to the best hospital available for their life-saving medical care. Single-payer health care, folks. It's the only way forward.
Home again, home again, jiggity jig. It is oddly tiring, talking to doctors for five hours. (With big gaps -- VERY glad I brought my laptop with, and was able to get some work / goofing off done.) Have stuffed myself with pita and hummus, and am now going to peel off these clothes (and yes, dressing up a bit made me feel better in the meetings -- even when I was in a patient robe, having my hair and make-up done (and cute socks) made me feel a bit more secure -- no idea if it had any effect on the medical personnel).
I'm going to go with Loyola. More on that in another entry soon, but mostly, it is because they seem more thorough. The fact that they started calling me Dr. Mohanraj after learning I was a professor had nothing to do with it. (I'm going to have to break them of that, but it was pretty amusing.) And the phlebotomist really loved my hair, so that was nice. She also loved my accent, which she seemed to think was British -- I think my childhood accent comes out a bit more under stress, and it was definitely slightly British-inflected, from my parents' accent, plus, of course, a strong strain of New England. The Midwest has flattened it out quite a bit, but according to her, she could listen to me talk all day. Way to a girl's heart, even if you're about to poke her with a big needle.
The Loyola docs have revamped my plans for next week, which now include another MRI on Tuesday, and then a bone scan, CT scan, and BRCA testing on Wednesday, to be followed EITHER by a biopsy OR a follow-up meeting with doctors. (They are, as I said, very thorough.) So no chemo next week; possibly the week after. I'm allowed to fly post-chemo, (hooray!), but have been told to wear a mask on the plane, just in case, because of the re-circulated air. That'll be...interesting.
I have done very little today, and yet, I am exhausted and ready to fall down. Luckily, I can go do just that, since Kevin is perfectly capable of feeding the children and putting them to bed. And so I will. Or rather, I will fall into my very very comfy bed and pull the covers up and watch HOURS of silly superhero tv.
Briefly furious at confusion with referrals that threatened to send me home without meeting other two doctors. Sorted out now, but only after I'd gotten dressed again (and after various staff members went above and beyond). It's fine, I can dress and strip as often as necessary, but DAMN, America has a stupid medical finance system. How much wasted patient / doctor / staff time goes into the whole insurance / referral system? I can't even.
The first teaching day (after diagnosis
it seems my life now is divided into b.d. and a.d.)
I wore a flowered bra and matching undies,
the most feminine ones I owned. Not for
the students, certainly, who would never see them,
not even for my partner. I layered a white cotton tank,
a pink cashmere cardigan found at the thrift store
a week before, grey corduroys worn with embroidered
flower socks beneath. Pink jewelry too, the most
delicate I owned, blown glass beads and gold thread,
made in Vermont by a local artisan, from the first
teaching job I had post-doctorate (thats another
division in my life, I suppose b.d. and a.d.).
Frankly, the whole thing was the most feminine
outfit I could possibly put together, out of a wardrobe
that in winter tends more towards steely grey and
blustery blue. This is why the damned ribbons
are pink, I think. This rotten, rotting cancer strikes
at the beating heart of breasts I may have cursed
for their intransigence, their unwillingness to fit
into bras or shapely dresses. A female thing,
and even though I have, more than once, when
contemplating sports, or even a run, wanted
to simply lop them off and be done with them,
I find myself oddly protective now.
They fed two children, these breasts. Poorly, granted
we never quite managed to make nursing work,
resorted to the double-pump, the doubled hours
of pumping and feeding. But perhaps some small
immunity was lent as a result; we can hope. They
have offered a great deal of pleasure in their day,
for all their unwieldy inconveniences. Now,
I am protective, defiant, angry on their behalf.
They worked so hard. Shall I abandon them?
My friends are handling this all so well; I really appreciate how kind people are with their offers to help, but also how careful and thoughtful they're being about the conversation, letting me set the pace of when to bring it up, how much to discuss it. They show an interest, but they don't push; it's perfect. There have been times when too much sympathy would have slid me over the edge into tears, and I really don't want to be weeping all the time. People have been so good about reading my cues, pulling back when I pull back, changing the subject to something light. I feel like I need to take notes for the next time I'm doing this for someone else.
Yesterday I had another ultrasound (this one a bit painful, because they had to squish down pretty hard in order to try to find what they were looking for), and next Friday, I have one more procedure -- a follow-up MRI with biopsy, because the last MRI found something suspicious on the other breast. I am not thrilled about this -- the MRI was no fun, the biopsy was no fun, and now I get both of them together, whee. There may be a big ice cream sundae afterwards, even if it's only 9 a.m. Cancer means the rules of civilized dining mean nothing, nothing, I tell you.
Today I meet with the Loyola doctors, my second opinion people. They're not going to say I don't have cancer (hah!), and they probably are going to recommend the same course of treatment, because cancer protocols are done according to a national standard, and the doctors don't seem to have much (if any) room to vary from those. So mostly, I'm going to meet the doctors, especially the oncologist, see how we get along, find out what the spaces are like, see how comfortable I am in them, etc. More soon about the choice between different doctors / hospitals; it's a complex and fraught topic with a lot of class-based complications.
We're almost ready to start chemo, I think -- within a week or two. Part one, diagnosis and waiting, is almost over. Thank all the little gods and fishes.