Mary Anne Mohanraj


April 24 -- 6:42 AM

Cancer log 72: Catholic hospital edition. Okay, so I admit, I wasn't really thinking about Loyola being a Catholic hospital when I switched over to it. Mostly I wanted a particular oncologist / surgeon team that a friend had recommended, and I wanted the research hospital environment. All of that has gone well for me -- I like my team, and being at Loyola has given me access to the clinical trial, which has given me access to the newer chemo drugs with fewer side effects. All of that is good, and I don't regret it. But.

One of the things I'm supposed to do as part of this treatment is remove my IUD. Now, I admit that I'm actually not quite sure why I'm supposed to get it out -- it might be that its efficacy might be compromised due to the chemo drugs. More likely, it's because it's putting out small doses of hormone, and since my tumor is triple-positive for various such hormones, it seems better not to poke at it with extra hormones? Something like that -- I admit, my grasp of the science here is really weak, and I'd actually appreciate a better explanation. In the flurry of all the medical stuff, this wasn't one that I took the time to get a good handle on -- I just accepted that both oncologists I spoke with seemed certain that the right thing to do was remove the hormonal IUD.

Now, they do want me on birth control. I want that too! It would be very bad if I got pregnant right now -- it would knock me out of the clinical trial, and regardless, chemo + pregnancy don't mix well. So my first doctor recommended switching to the copper IUD. The Loyola doctor couldn't recommend any such thing, even if it is the best medical approach because....

...she's at a Catholic hospital, and they're not allowed to say that.

This is where you want to bang your head against the wall. Doctors at Catholic hospitals aren't allowed to recommend any birth control *as* birth control to their patients. Interestingly, they get around that a lot, for a lot of things. Birth control pills, for example, are used to treat other medical conditions, such as excessive pain / bleeding during periods (dysmennorhea, I think it's called?). So doctors can prescribe you the pills for that, and if, as a side effect, you're also getting birth control, well, that's not their fault.

Some of the other birth control methods that are *also* very effective at treating dysmennorhea, possibly more effective than the pills, are not yet approved *for that other treatment* by the government, which means that even if your doctor believes that the best way to keep you from suffering miserable painful periods is to have you on something like Norplant, if they're at a Catholic hospital, they can't prescribe that for you. Technically, I don't even think they're supposed to *tell* you about it.

(Similarly, if I were teaching at a Catholic university like DePaul here in Chicago, I'd have to sign a morality clause restricting my ability to give such information / advice to my students. I did interview at one Catholic university, but when I realized what I'd be asked to sign, they dropped off my possible list. Just last year, I had a student who dropped out of my class because he'd gotten yet another girl pregnant and he was just overwhelmed with his parental responsibilities. You're telling me I can't talk to this kid about the possible utility of condoms? Go to hell, I believe, is the correct response.)

So, the upshot of all this for me is that at Loyola, my doctors can remove my hormonal IUD, but they can't insert a copper one, even if that is likely the best approach to keeping me from getting accidentally pregnant during chemo. It took me an hour and talking to three different people on the phone before one of them finally admitted that the reason they couldn't give me a referral to someone who could insert a copper IUD was that they're a Catholic hospital. "I'd have to talk to my insurance provider."

And, of course, it turns out that when I do talk to my insurance provider, that since my hospital-of-record is Loyola for the cancer treatment, I can't go to any of the other doctors in my network who are affiliated with other non-Catholic hospitals. So if I want a copper IUD, I'm pretty sure my only option is to pay out of pocket for it. We are likely stocking up on condoms for the next few months.

And yes, abstaining from sex would be an option, thanks for asking, folks, but given that I'm expecting my body to feel yucky for much of the next four months, I am disinclined to give up opportunities for it to feel good. And yes, we could just engage in non-possibly-procreative activities, and those are also lovely, but god damn. I am a little infuriated that my hospital and my doctor should have any input into our choice of bedroom activities whatsoever.

Short version -- this morning, I'm going in to having my IUD removed. I am hopeful that within the year, I can go get it inserted again, because the IUD is a lovely, lovely thing. And if that means that after my cancer treatment is over, I'm going to have to switch hospitals again, so be it.

I am normally a fairly cheerful agnostic, and I don't hold a grudge against my Catholic upbringing, but right now, I am the most lapsed of lapsed Catholics. I'll just be over here, impotently shaking my fist against the Church, and insurance companies too, for good measure.

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April 21 -- 1:02 PM

Cancer log 71: You know when you try to pick up a new habit, like eating healthier, exercising more, learning a new language or a musical instrument? And initially you're full of enthusiasm and determination, and then there comes the point where you just run out of steam, and it's so easy to just give it up then? And often, you do, maybe to try it again at some point, maybe not. I feel that way about cancer right now.

Not that I can give it up! If only that were an option. But it's been about three months since diagnosis, and if I were grading myself on how well I've been dealing with it, I think I'd have to give myself an A. I've been very good! Doing all the medical things as needed, on time. Keeping up with my other commitments, responsibly paring them away in a controlled manner. Having only a few meltdowns, and always at a time when they could be dealt with without really inconveniencing anyone else. I've even mostly been eating sensibly and staying (sort of) within our budget, rather than doing what I really want to do, which is having cake and ice cream for every other meal and buying plane tickets to a villa in France.

I have been so good, and I am so very tired of being good.

There's two weeks until the end of the semester. I can get through the last push of classes and grading, I can. There's really not that much left to do. But I feel like I'm wading through mud, that even the smallest task, like answering an e-mail from a student or prepping a lecture for class, requires me to summon up vast reserves of willpower. The effort required is completely out of proportion to the actual work.

Everyone has been telling me to take it easy, and I'm trying to, I swear. I just need to get through this last little bit, and then I am going to lie in my hammock for the next four months and re-read old favorite novels. McCaffrey, Pratchett, Bujold, here I come....

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April 19 -- 6:58 AM

Something last night drove me to re-read a particular book -- but I couldn't decide if the one I wanted was Nina Kiriki Hoffman​'s The Thread That Binds the Bones or John Crowley​'s Little, Big. So I read the Hoffman last night, and am reading the Crowley now. They start in remarkably similar ways -- a stranger meets a woman from a mysterious family, and they marry, and strange things happen.

But the two books go in completely different directions, and are, of course, told in completely different styles. And my current novel opens with a woman marrying into a mysterious family (except she's marrying three strangers, not just one). Also, no magical beings, but yes, genetic engineering.

Was I influenced by these two books, on some level? Or is this a common / universal human theme? Just pondering tropes. :-)

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April 17 -- 2:49 PM

Cancer log 70: I couldn't sleep last night -- in part because I stayed up a little too late watching the first Game of Thrones episode of the new season, in part because I was thinking about revisions to the novel. (Mostly a steamy sex scene, which I swear is integral to the plot.) It's been a while since a book kept me awake. It's a good thing.

The last few months have been in large part a process of paring away as many commitments as I could -- I've said 'no' far more often than I normally would. I've been trying to wrap up everything I had hanging so I could focus on dealing with the cancer -- and it has largely worked. I'm just finishing the last look at the book I agreed to edit; it's about to go out the door to the printers. There are just two more weeks left to the semester; just a bit of paper-guiding and grading to go. I might attend WisCon and/or the Nebulas, but I haven't signed up for any programming in advance. I'm planning to spend one week in D.C. visiting my sister, but otherwise, the next four months are shockingly free -- more so than...well, than ever.

It's a quieter stretch than at any other time in my adult life. A chemo infusion every three weeks, then every two weeks. And otherwise -- rest, read, garden as I feel like it, and think about the novel. My agent wrote me a really nice letter when I told him I had cancer -- among other heartening things, he said that this might actually be good for my writing. I admit, I kind of thought he was being silly.

But y'know, he might be right. If nothing else, I've gotten some practice now in saying 'no' a bunch (the sky didn't fall down!), and clearing away a stretch of time as a result. This could be a useful life skill for a working writer!

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April 17 -- 2:47 PM

Sorry -- my blog was somewhat broken for a few days -- Jed has fixed it now. Catching up from 4/14:

Cancer log 69: Thereís a great secondhand clothing store in my neighborhood, Trends Ė itís where I go when Iím feeling the need for some relatively cheap retail therapy. I can usually score a cute top or dress for about ten bucks, and itís surprising how well that works to lift my mood. Itís less effective, it turns out, when I find myself considering with every piece whether itíll hide the port scar or not.

I donít mind my port, generally Ė Iím actually kind of fond of it now, since it means less ouchiness with the actual chemo treatments and blood draws. Weíve also mostly trained Anand to stop hurling himself into me Ė ouch! But still, I donít necessarily want to advertise, ďhey, I have cancerĒ when Iím walking down the street. I could, of course, tell everyone that itís actually an old dueling scar, but given that I havenít picked up a sword since high school (and even then, theyíd only let the girls use foils, dammit), that claim might be less than convincing.

Itís been a rough five days since Thursdayís chemo, but interestingly, Iím not sure I can blame it on cancer. I felt a little nauseated, but basically okay on Friday and Saturday. Then, Sunday, I went to Whole Foods to pick up some things, and I thought I was fine, but I picked up one of their free samples of grilled mahi-mahi with mango salsa, and as I raised it to my mouth, I almost threw up right there.

I paused a sec, then ate it anyway, figuring I was just over-sensitive to smells. Theyíd warned us that might happen with chemo, and I remember that from pregnancy too Ė there were a few months when I couldnít take Ellie to the dog park because it smelled so horrible to me. The nausea passed, and I finished my shopping and went home. Only to find myself, around midnight, waking up and emptying the contents of my stomach. That wasnít fun, especially when you add in that Anand was sick with a fever, and woke up every few hours crying for water Ė Kevin went when he could, but sometimes I woke up first. It was a rough night.

Monday morning, I was initially inclined to blame it all on chemo, but as the day went on and I was only vaguely queasy, I started to wonder. I think, in retrospect, that I actually got a spot of food poisoning from Whole Foods. I am utterly indignant about that, not that my indignation does me much good now. And on top of that, I think I may have caught Anandís cold-thing; I havenít had much of a fever, but sneezing and coughing a bit, and yesterday, I made it in to teach, but halfway through my second class started feeling really shaky. I got through it and drove home okay, but I then collapsed on the couch, and then the bed, and basically slept from 2 Ė 8 p.m. Woke up long enough to watch a tv show with Kevin, and then slept my regular eight hours. Woke up today feeling mostly-human again, though I did nap much of the morning. Felt well enough to go for a proper walk this afternoon, though.

All of which makes it really hard to tell if any of this is chemo-related or not. I need a longer baseline! Guess weíll just keep tracking things and see. Iíll try to spare you too many details of my gastrointestinal concerns, though. :-)

Since some people have been asking, hereís the schedule for treatment Ė for three months, itís an infusion ever three weeks. So start with April 9 and count from there. Then in July, I switch to the AC combo, which is more heavy-duty and more likely to make me sick. I am somewhat cranky about the timing of that, because my birthday is in July, and chemo is pretty much the worst birthday present ever. I plan to complain bitterly, just so youíre warned. Thereíll be two months of that, infusions every two weeks through July and August. Then surgery, in September, and daily radiation for six weeks, in Oct/Nov, I think. Should be all done with treatment by Christmas, if all goes well, lord williní and the creek donít rise.

And now, my darlings, off to do my taxes. With luck and nasty treatments, Iíll be able to stave off death for a long, long time, but taxes are inevitable.

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