Cancer log 34: …

Cancer log 34.

Several people have commented to me that they've been surprised at how much my normal life has just kept going -- either they expected someone with cancer would just switch over to being someone with cancer, or in some cases, they themselves had cancer (or some other serious illness), and had found that that became the focus. And listen -- you have to do what works for you. There is no inherent virtue to the way I've been doing things.

I found the way one of my colleagues framed it tremendously helpful to me; she said I could either continue working and just take off the days I really needed to take off, or I could go on disability immediately and focus on dealing with the cancer full-on. She'd seen others go through this, and she said that for some people, it seemed helpful having other things to think about, a normal routine and activities to engage with, as much as they were able. And for me, that's so clearly what I'd prefer. But that's not going to work for everyone, and it may not even keep working for me. I'm still in the diagnosis / testing phase -- I have no real idea how the various phases of treatment will affect me.

That said -- I do have a truly terrible cold right now. And it's just a cold, but it has knocked me out (and Kevin too -- he has the same cold). I was feeling exhausted all day today; I barely had the energy to put away a load of laundry; just climbing a flight of stairs wore me out. I have a hacking cough, barely kept in check with regular dosing with cough drops. And I'd agreed to do this thing, months ago -- to go to this play tonight, that started at 7:30, and stay afterwards for a panel discussion. Keep in mind that even when I'm not sick, I'm usually asleep by 10, so you can see that doing this while sick was a stretch for me. All day, I was waffling about it, tempted to call and cancel, back out -- I even came up with a replacement for my spot on the panel, someone I thought they'd be okay with subbing in. (Angeli, you were almost a panelist.)

But...I knew that normally, even when it happens past my bedtime, art energizes me. This has happened before, pre-cancer -- I've had to talk myself into going out for evening events. Experience has made clear that being on a stage, talking about a topic I love, a topic I feel strongly about (in this case, South Asian arts and the politics thereof) is going to a) be tons of fun b) give me a chance to see colleagues I don't get to see often enough, and c) make me feel great both during and afterwards.

So at 5 p.m. I took a solid dose of DayQuil, and then I took a shower, and after both of those, I felt almost human again. Still a little wobbly -- Kevin asked if I was okay to drive when I knocked over a ketchup bottle trying to make myself a hot dog for dinner before I headed out. But I thought I was okay. And, in fact, my energy levels stayed up, even thorough the play, and the panel after was super-fun, and even though I didn't get home 'til 11, I'm still a little buzzed now.

There will likely be days when I just have to cancel, have to beg off prior commitments because I really am too sick to follow through, and I'm going to need to pay more attention to that than I'm used to doing. (I tend to just power through.) But I do think there's so much benefit to still being out there in the world, as much as you can, doing the work you love. At least for me, that's part of staying healthy too.

And now I'm going to eat something and pour myself into bed. G'night, folks. See you in the morning!

P.S. The whole time I was grading papers this weekend, there was a little voice in the back of my head whining -- "But I have *cancer*!

I sternly told it that if I wanted the fun parts of teaching to continue, I didn't get to just opt out of the less fun parts. I knew that New England Puritan work ethic was going to come in handy eventually...

Cancer log 33: Brief…

Cancer log 33.

Brief note that they do want to do another set of biopsies, as expected, so I won't be starting chemo this week. I am impatient, but at least the good news is that I won't be immuno-compromised for FogCon, and will be able to give and receive hugs with impunity. Well, except for the fact that I have a cold, so hug at your own risk.

The biopsies are because the MRI found suspicious things, but we already knew about those, and we're hopeful they're just scars from the reduction surgery in 2011. But they're going to poke at me a bunch more to be sure.

Oh, and bone scan and CT scan came back negative, so whee! (As expected, but still.)

Cancer log 32: I’m

Cancer log 32. I'm hoping this morning they'll call me back and tell me if they want me to do one more biopsy before starting treatment. I'm not sure if the Loyola docs are going to give me any kind of clear prognosis / staging -- on tv, they call you in and tell you, very seriously, that you have Stage X cancer, but that appears less clear cut in real life. In my real life, anyway.

When I originally was diagnosed, it seemed like they were going to put me at Stage 2, which had a 95% five-year survival rate, or in another words, a 1 in 20 chance of dying. I was feeling morbid enough that first weekend that I went and looked up various other things that kill us; I was hoping it would turn into a poem, but it never quite jelled. But here are a few odds of death, in case youre curious, culled from various reputable sites.

Heart Disease: 1 in 6
Risk of death in childbearing (Africa): 1 in 15
Chronic Lower Respiratory Disease: 1 in 29
Base jumping: 1 in 60
Traffic accident (US): 1 in 82
(more specifically, ranging from 1 in 50 to 1 in 100, depending on various factors)
Grand Prix driving: 1 in 100
Unintentional poisoning: 1 in 123
Falling down: 1 in 246
Assault by firearm: 1 in 340
Asteroid impact: 1 in 200,000 (perhaps 500,000)

Cancer log 31: I got…

Cancer log 31:

I got my diagnosis on a Friday afternoon, and really, I think I was mostly in shock the rest of the day. I managed to drive home from work, and then collapsed with Kevin on the couch in the living room. It didn't seem real, most of the time, but occasionally, it would hit, and then I'd lose it a little. I mostly wasn't scared of dying -- that in particular didn't seem real, and still doesn't, mostly. But what did seem real, what terrified me, was the thought of leaving my kids without a mother.

I always knew that was a risk, of course. I had my first child at 35, and my second at 37. Advanced maternal age on the charts, and I certainly felt it, when I was staying up all night with infants or chasing after high-energy toddlers. My mother had me when she was 19, and there were many times when I thought she made the wiser choice. But mostly, I consoled myself with the thought that I was a more patient, easy-going mother, for being older, than I would've been otherwise. Possibly even a bit wiser.

And I didn't really think there was any danger that we wouldn't be around for their childhood. Kevin and I would talk about how we just needed to get them to college, but we didn't think that would actually be in any jeopardy. (Paying for college, on the other hand...) We thought we could count on living into our 60s, at least -- all four of my grandparents lived that long (though not much longer). Plenty of time to get them into college, and out the other side.

But I have friends who lost their mothers young. Some when they themselves were still children; a few in high school or college. And even though I teach college students today, and they certainly consider themselves adults, I'm now old enough that to my eyes, they tend to look like children too. Trying so hard to be grown-up, to take care of themselves, but so often floundering, unsure. When my kids get to that stage, I hope we have the kind of relationship where they feel like they can call up their mother and get some advice.

As I learned more about the diagnosis, I panicked less. I'm in the 95%+ likely-to-survive group, so odds are, I'll be around for quite a while. But yesterday I had the BRCA gene testing, and we mapped out my family tree, and talked about how my positive diagnosis means an increased likelihood of cancer for my children, and I have not been angry about this cancer so much, but for a moment there, I was raging.

I'm a calm person, normally, but this is where my emotions rise to the surface and spill over. I am scared for them, scared for all the sad, bad, hard things that they're going to encounter in their lives. So far, we've protected them from almost everything, but hard days will come. And now, a little bit of me is quietly terrified that their mommy won't be there to help them through it, whatever it ends up being. Broken hearts, false friends, bad choices, bad luck. There are so many things in the world that can hurt them, and some of them may be embedded in the very genes of their bodies, the bodies we gave them.

I used to joke about hybrid vigor, but on some level, I took comfort that Kevin and I came from opposite sides of the planet, that, in fact, whatever bad genes we carried were less likely to be passed down to our kids. Maybe we did improve our odds a little, by choosing to combine across such a wide genetic divide. Not enough, though. Not enough to guarantee their safety.

The genetic results will come back in two weeks; we'll see if they're at increased risk or not. (It surprised me to learn that 70-80% of breast cancer is sporadic, rather than genetically-linked.) I had a repeat MRI yesterday (hence the jellyfish socks); we'll see if they want another biopsy, or if we can go ahead and start chemo. One way or another, we're almost done with the testing; soon, we start actual treatment.

I can't wait. I know the chemo will make me sick, will make me feel horrible. But I plan to be around a long, long time -- I plan to see them go to college, and out the other side, and if Kavi and Anand decide to have kids, I want to be around to meet the grandkids. So dammit, let's go already. Time's a-wasting.

*****

I wrote this poem more than a year ago; it feels bizarrely prescient now. But I think all of us who have our children late worry this way.

Belated Parent

Ive never been afraid of dying.
Its true. I have friends who worry
about their deaths a lot, friends
who take an array of supplements
so they can live as long as possible,
the kind of people who inwardly rage
that they were born too soon
before we learned how to live forever.

Ive never really understood that.
Ive always wanted to live
as if I could be hit by a bus tomorrow,
wanted to live fully, saying everything
that needed to be said,
doing what needed to be done.
People say to me, often,
I dont know how you do so much!
They dont understand --
Im trying to pack it all in.

But now I have a problem.
My father is seventy,
works full-time, takes long walks,
watches what he eats -- in some ways
looks better now than he did
a decade ago. I may have him
for a long time yet, but I can also see
the day is coming, like the day
when I was small. The letter came
across the wide ocean,
on onionskin paper, thin and blue,
telling him his father was dead.
The only day I saw him weep.

And now, I have a daughter, a son;
I want to give them everything.
I had my children late in life,
and I may not be here to meet
their children, should they have them.
That is a regret.

But my fear, my terror, is that
I will leave too soon. A stroke,
a heart attack, a cancer will descend
and carry me off while they are still
too small to understand. I have friends
who lost a parent young. They went on,
built good lives, full of love, but Im not sure
they ever recovered completely.

And even if I survive
another seventeen years,
until my son is twenty-one,
until they are both, technically, adults --
I do not know if there will be
enough time to tell them
everything. Everything I want
to say. This is what I want to say.

Im sorry. Im so sorry, my dears.
For you, I would have lived
forever.

*****

November 2013

Cancer log 30: There…

Cancer log 30:

There are little things that make all this easier. I bring my laptop and a book with me, every time I come to the hospital -- if I end up spending an unexpected hour waiting for a procedure (as I have been today, due to what I hope is the last of the referral frustration), I can avoid being totally enraged at the wasting of my time, instead being productive / entertained. I discovered where in the Loyola complex (the nursing school) you can find a Starbucks chai tea latte -- despite its not bearing all that much resemblance to actual chai, I find it a comforting and decadent drink, and its treat-like nature helps to counter the simmering irritation. I'm wearing comfy clothes, and comfy shoes -- the latter were particularly helpful as I went to two different wrong buildings today, trekking an extra twenty minutes back and forth. I keep snacks in my backpack in case I'm stuck somewhere and get hungry (just ate a Kind bar, very glad it was there). I make sure that I have childcare coverage (thanks, Kat!) in case things take longer than I expect, as they so often do; adding time pressure to this process is additional stress I don't need. Nothing can make the hospital actually fun, but if I'd spent the last four hours just sitting around waiting for people and paperwork, I'd be in a much worse mood.

Cancer log 29: BRCA…

Cancer log 29:

BRCA testing this morning. BRCA stands for BReast CAncer susceptibility gene. There are two BRCA genes: BRCA1 and BRCA2. Normally, they help protect you from getting cancer. But when you have changes or mutations on one or both of your BRCA genes, cells are more likely to divide and change rapidly, which can lead to cancer.

I'm guessing this will come back negative, since we have so little cancer in my family, but on the other hand, I expected the biopsy would come back negative too; the universe is full of surprises. If it's positive, that means the likelihood of recurrence is higher, which may affect my later decision (in 5-6 months) about how extensive a surgery to have. We'll see how it goes. I think this one is just a swab, so it should be the easiest of the tests.

And then we're hoping to do another MRI, if the referral comes through. The whole referral process has been frustrating and slow enough that I've lost about a week of treatment time, I think. It's unlikely to be a critical week, but still. Yesterday, I switched my hospital-of-record over to Loyola, and picked a new primary care doctor, who should be able to process my referrals much faster.

I'm a little bummed to leave my old doctor, whom I really liked, but Kevin and Roshani were quite certain yesterday that I needed to be proactive about making sure my care was taken care of in a timely fashion, and they're right, of course. At least the hospital switch went smoothly -- both my old hospital and new one are in network, and insurance let me make the change in about five minutes total. It only takes effect on the first of each month, but luckily, that's in a few days, so there won't be any delay to affect me. I'm planning to stop by old doctor's office and drop off a little present of some kind -- probably a book or two of mine. She's been great, and I feel bad abandoning her, though I know she'd tell me I'm being ridiculous and not to worry about it. Stupid insurance system.

The MRI is a repeat -- Loyola felt that the previous one wasn't done well enough for them to be certain of what they were seeing. Beyond the definite cancer, there are two other suspicious areas that they want to look at again. It's possible (likely) that those are just scars from the breast reduction I had in 2011, esp. since they're in roughly parallel locations on the two breasts. If they decide that's not necessarily what they are, it'll mean a MRI-guided biopsy to confirm or deny the presence of additional cancer. It'd be very bad if those came back positive -- it'd move me into a later stage cancer group. Seems unlikely, though, so I'm trying not to borrow trouble.

Right now, test test test, and wait for the results. We'll see what happens.

Cancer log 28: People…

Cancer log 28: People are so nice. Here are just a few of the ways people have been nice to me lately:

  • banana nut muffins arrived on my doorstep just now, with a note suggesting they could make breakfast a little easier tomorrow (or lunch, snack, or freeze...)
  • my editors taking on some of my work to make it easier to finish the anthology
  • books being mailed to me (one on fighting cancer, one a cheerful picture book telling kids why mommy's hair is falling out)
  • my department hiring subs to cover classes I can't get to (this one is HUGE, and I am so glad my department has both the financial resources and the social will to support me in this way)
  • a mom at the school's PTA re-opening the after-school class registration so I could get Kavya into the new Indian dance class (that I helped organize adding to the curriculum!) -- I had been so harried the last two weeks that I'd missed the sign-up period, but she's in now!
  • a friend meeting Kavi at the bus stop and keeping her 'til 4-ish most days the past week, when I had hospital procedures
  • literally gazillion offers to help, and local people especially offering babysitting or grocery runs or hospital chauffering
  • many people who have been through cancer, or had a friend go through cancer, offering to be there as a resource, as needed
  • medical friends doing research to learn more about breast cancer and then offering me advice
  • doctor / hospital staff going out of their way to make things more comfortable / easier / possible for me
  • a glorious floral arrangement from my college roommate (that one is for wedding, not cancer, but including it because it's in the picture :-) )
I'm sure there are several more I'm forgetting. I wanted to list at least a few though, particularly because I know so often people want to help in this kind of situation, but aren't sure how to do it.

I know it's super old-fashioned to offer to bring a casserole, and it undoubtedly feels cheesy, but I have to say -- I think it's not a bad idea. I mean, we don't need fifty casseroles the first week -- we don't have the freezer space. But last night, we were too tired to cook after the day of procedures, and ended up ordering out; luckily, we can afford to do that on occasion, but I would not have turned up my nose at a casserole, esp. a kid-friendly one!

Cancer log 27: CT scan…

Cancer log 27: CT scan and bone scan, the detailed description.

So, my understanding is that they wanted me to have these to check for additional metastases (signs the cancer has spread). We are really hoping these two tests come back negative. I have no symptoms of bone pain, but the bone scan will check whether my bones are healthy and also create a set of baseline images that could be compared to any future bone scans that are done. This test is often skipped with my kind of breast cancer, but I'm happy the Loyola docs are being thorough, even if it's unlikely to find anything.

You show up having fasted for four hours (so I had a good breakfast early). The bone scan started with an injection of radioactive material in my arm. (Tiny prick -- skilled tech this time, and I barely felt it. Well done, sir.) Science detour for those interested: "[The radioactive material] will be taken up by the bodys bone-making cells over the next few hours. These bone-making cells are found mostly in areas damaged by disease, where they are busily trying to make new bone to patch the holes. After waiting 2 to 4 hours for the radioactive substance to be absorbed, the doctor uses a special camera to scan the body. Areas of extra bone activity (common in both cancer and arthritis) will show up on the scan because the radioactive substance collects in areas of new bone formation. These areas appear as dark patches on the film. Any part of the bone can be affected by cancer." (http://www.breastcancer.org/symptoms/testing/types/bone_scans)

Then they sent me off to do the CT scan, because, as noted above, it takes a while before your bones are fully radioactive. Yes, I made jokes about Spiderman, and the tech countered with jokes about the Hulk. I would rather be able to climb walls and spin webs in my daily life, I think, than be immensely strong and rip out of my clothes, if those are my two choices. The Loyola radiology department is in the basement of the hospital, and I asked if that was because of the radiation, and he said quite possibly, because back in the day, they worried about such things and were also spewing vast amounts of radiation hither and yon -- okay, that's not exactly how he put it, but close. These days, it's much more controlled and targeted, and apparently the (newer) Northwestern radiology department is on the sixth or eighth floor and he would really like to work someplace with windows someday. Ah well.

When the tech was injecting me (with RADIATION, whee!), he also put in a IV line. So I scooted off to CT with that in place. The CT scan examines your internal organs. Once I got there, I was given 1000 mg (I think) of horrid stuff to drink, and asked to try to get it down in half an hour. Readers, this was not easy. Any given sip of the milky substance wasn't so bad -- it had a faintly sweet, maybe citric flavor. But it's just a big volume of thick liquid to try to get down. I ended up holding my nose for some of it, but I'm not sure that actually helped.

This was absolutely the worst part of the whole day, and I'll note here that if you pick up the solution (barium sulfate, which allows for better computer tomography of the gastrointestinal tract) in advance, you can start sipping it before you even get to the hospital -- spreading it out over an hour or two would, I'm pretty sure, have been much easier.

When I was done with it, they had me change into a gown. Now, it turns out that they don't actually need you naked for this one, but you can't have any metal on you, which includes things like zippers, metal bits on your shoes, etc. But one woman in the room with me had clearly been through the drill before, and she showed up in sweats, with slipper shoes, and she got to keep all her clothes on and just threw a patient robe over it (to signal 'patient,' I suppose). Smart! But I don't really mind stripping down, and when they had me lay on the bed, they added a few blankets, and I was totally comfortable.

Arms above the head, and then I slid feet first into the machine, back and forth a few times, holding my breath when it told me to (presumably to help me hold still). Halfway through, they added the contrast through the IV line, and that was FASCINATING -- the tech had said it'd feel warm, but it was almost hot, and I could feel it rushing through me, moving through various parts of my body. (He was a sweet older black man and kept talking about the department's warm Southern hospitality, which was pretty funny, and also led us off onto a long discussion of New Orleans and the food there and I was really craving cheese grits by the end of that.) It felt like when you slide down into a hot bath -- but on the INSIDE of your body. Neat. Weird!

Then that was done, and I got dressed and headed back over to the bone scan (pictured below -- I had my phone with me for this one, so could grab a few pics). Lie down again, fully dressed, and they gently strap your arms to your sides and your feet together, so you'll lie still. Then about ten minutes of the machine scanning you. I actually fell asleep; I was starting to feel pretty wrung out by that point. And that was it -- all done.

I felt kind of shaky afterwards, which I think was the barium + contrast; I was okay to drive back, but I do think that if I weren't relatively young and fit, this would all have been harder on me -- some folks had brought friends or partners with them, and if you're doing this, I'd absolutely consider that, esp. if you're not in good health generally. (I still *feel* like I'm in good health, despite the cancer. Lots of energy, still getting my 10,000+ steps a day, etc.) When I got home, I had some real food and pretty much climbed into bed for the rest of the day. I *could* have worked instead, but resting was the better part of valor. Common side effects of the barium include nausea and diarrhea, so your friends and colleagues would rather you went to bed, I think!

Props to whomever came up with those beautiful photos to layer over what would otherwise be ghastly fluorescent light panels -- really added brightness and cheer to those basement rooms. The CT scan had clouds and a bright spray of bougainvillea. There was lots of waiting, so do bring some kind of entertainment -- Sir Terry Pratchett kept me company for the day, and I was very grateful for his presence. Overall, not a bad day. We'll see what the results show.

Cancer log 26: Signs…

Cancer log 26:

Signs and symbols. Today I had two procedures -- CT scan and bone scan. They weren't terrible, but there were some slightly painful moments, some uncomfortable bits, and a lot of tedium (the whole thing took four hours). Today was the first day since the cancer diagnosis that they put a patient ID bracelet on me, the first day they gave me a page of stickers with my name and bar code, ready to paste into as many forms as necessary.

I haven't felt sick at all up until this point -- if it weren't for the mammogram a few weeks ago, I would just be going about my daily routine right now, assuming I was healthy. Today I felt...almost branded. Warning: sick person here. I found myself taking comfort in my bright starry socks, and my new wedding ring. Warmth and love against the cold.

Cancer log 25: …

Cancer log 25:

Schrdinger's referral again today -- will it come through in time for me to do my scheduled bone scan and CT scan? It's a mystery. My subs are teaching my classes today, in anticipation of my needing the time off for procedures; if the referral doesn't come through, it means I've taken a disability day for no good reason. I'll try to use the time productively, which in this case, probably means spending a few hours on the phone with the insurance company, trying to see if I can change what hospital I'm assigned to. Getting married may make that possible, if it's not otherwise.

OH, THE HUMANITY. OH, THE BUREAUCRACY. OH, THE AMERICAN HEALTH CARE SYSTEM.

10:40 update: Despite several phone calls, they still don't know. Insurance is apparently reviewing my case now. I am about to go drop Anand at preschool, and then go to the hospital, just in case it gets approved. Am supposed to start drinking the contrast stuff @ 11, so must know one way or another by then. If not approved, there's two solid hours of my day, wasted.