Cancer Log 212: After yesterday’s bone scan

Cancer Log 212: After yesterday’s bone scan, I came home and basically put myself to bed at 6 p.m. I made myself eat something, though absolutely nothing sounded good. I was so tired, for no good reason. Stress? I played video games and watched tv and read and posted a little and eventually Kevin put the kids to bed and came to bed himself, and then we watched a show together and then I spent a while catastrophizing to him about the bone scan.

My lower back hurts a lot these days, and I really do think it is probably just bad shoes + lack of exercise. But maybe it’s a slipped disc, hence the bone scan. But lying under the scanning machines (two 30+ minute sessions, and they didn’t have music on for either one, and I couldn’t fall asleep, so I spent it thinking unpleasant thoughts — I said all that to Kavi, and she said, “What have you learned from this experience? To ask them if they can put on music.”), I ended up not thinking about any of that, but instead fretting about what if the scan found bone cancer instead.

And that led me onto a delightful dance of even if they could do surgery for it and get rid of it, if I ended up needing to use a wheelchair, would it be possible to stay in our house? Maybe, with a chair lift to the second floor, but it would be a huge hassle in a host of ways and really, we would probably just move in that case, but I adore my house and I’m not ready to leave it yet.

(And what about my GARDEN? I know my garden will likely be too much for me at some point, and I’ve been mentally preparing to leave it in ten years or so and shift to something less labor-intensive, but not yet…)

And yes, this is all ridiculous and I normally don’t catastrophize this way at all; I’m sanguine by temperament. I tend to assume things will be just fine, which is in many ways my superpower, allowing me to go along in my over-ambitious merry way.

I think I’m just tired. Worn down, somehow. Too much time in hospitals lately. Too much constant work. The cold doesn’t help. I stayed in bed all evening, slept hard, and then Kevin actually got up to get Anand off so I could stay in bed a little longer this morning. (Usually I do mornings and he does bedtimes because I am a lark and he is an owl.) Best of husbands.

I need to get off the couch shortly and go get dressed and do some grading and then go teach, and after that is a long day — a SLF meeting with Karen, working on Portolan Project video / audio, then a walk up to the Carleton for a SLF-related fund reception for the Oak Park Community Foundation (that holds our fund which lets us accept stock gifts for the SLF). I had hoped to go to Cee Gee‘s gorgeous art reception in the city after that, but I’m so sorry, sweetie, I think I just don’t have the stamina today. 

All I really want to do right now is go back to bed until the results come back. Hopefully soon. It’ll probably be nothing. It’s usually nothing. Until it isn’t.

It was exactly 5 years ago today, February 12, that I got my cancer diagnosis — a routine mammogram had come back with cancer, entirely unexpected in a 43-year-old woman. Normally I’d be celebrating 5 years cancer-free today, but this bone scan nonsense is hanging over me. I resent it sucking out the joy that should rightfully belong to today.

Sorry for the bummer, folks. Hope to be back to my normal sanguine self soon. Look at the food photos instead. They’re lovely.

Comforting myself

I had a sucky afternoon (I don’t know why, but even though there was minimal pain (two injections), the 6 hours dealing with the bone scan at the hospital really got to me today), and am feeling thoroughly sorry for myself. In rotten mood.

I am going to comfort myself with playing Terraforming Mars while watching Anthony Bourdain on Hulu and possibly posting here off and on, I don’t know. Plus demanding the children and Kevin come snuggle me sometimes and leave me completely alone the rest of the time.

Plus chocolate. ALL the homemade chocolate ice cream I have left, with ruby chocolate and mango filling stirred in. I know this isn’t the most attractive photo. Hush, it’s good.

 

Cancer log 211: Lower back pain

Cancer log 211: Appointment with oncologist this morning; MRI came back clear re: potential oddness found on breast mammogram, so that’s very good and will be a relief once I have a moment to process it.

I did mention to her at the end of the appointment that I’d been having a lot of lower back pain lately. It goes away when I rest — it’s clearly tied to walking around. I admit, I was expecting her to just say something about my needing to buy shoes with better arch support or something. But instead, she said that she wanted to schedule me for a bone scan, and if that found nothing, follow-up MRI. Gah.

On the one hand, yes, I appreciate that she is an excellent doctor and is so on top of this. I appreciate that my insurance covers these procedures. I appreciate that as a cancer patient, I’m now getting a much higher level of surveillance, so that if anything is ever wrong with me, it’s likely to be caught quickly, so we can deal with it early. All of this is good news for my overall longevity.

(Also, I do wonder if having a black woman for an oncologist means that my reporting of pain is taken more seriously than it might be otherwise in the general medical establishment.)

On the other hand, the nurse told me to allow four hours for the bone scan alone (I come in, they give me a shot (tiny amounts of radioactive materials, aka ‘tracers’), I go away for 2-3 hours, then come back for the 30-minute scan). And then the MRI will be another 30 minutes. Plus waiting & travel time for both of them. And it took 15 minutes just to schedule them, and once I finish this entry, I have to get on the phone and reschedule a dental appointment I just made yesterday.

And it’s all TIME. I called Kevin to tell him all this on my way driving into work, and got teary because I am just SO TIRED of all this medical nonsense. I would like to just be healthy and stop thinking about it. And have my family be healthy and stop thinking about that too. (Anand’s IEP meeting was yesterday, and he’s doing better, which is good, but still needs supports in various ways. We’re glad that the public school is funded to provide those supports, but it’s also all stressful for us and for him. Poor munchkin. Poor us.)

Also, I am feeling desperately short of time, and behind on EVERYTHING, and I want to catch up on my work so I can start exercising again — a good part of my mind is convinced that the real reason my back is hurting is because I haven’t exercised properly since September when I got so stupidly busy. If I start lifting again and doing yoga and cardio, I suspect that will fix my back within a month.

But my doc wants to rule out the possibility of something like a herniated or slipped disc, and I’m 48 and this body really is starting to fall apart a little, so I guess that’s smart, and I do appreciate her care for me. I asked her if these procedures were really necessary, and she said quite firmly that she thought it was the best approach. So I will be a good, compliant patient and somehow make the time.

Gah.

#cancerlog

MRI done, went fine, it’s probably nothing.

MRI done, went fine, Xanax helped, fell asleep during procedure. But wow, had a moment of whole-body revulsion putting on the patient wristband. Really really don’t want to be a patient again. Results in 2-3 days. It’s probably nothing.

Rewarded myself for going to MRI with egg bites at Starbucks — and hey, my local Broadview Target is offering a free drink with sandwich or egg bite purchase this week. Score.

Cancer log 210: Intensely busy week

Cancer log 210: This is an intensely busy week without a lot of downtime and too many meetings. I had a library board meeting last night, and had somehow cross-scheduled it with my annual check-up, so I had to choose which I was going to — I cancelled the check-up (have to reschedule it today) and went to the board meeting instead.

That was the right choice. We were finally reviewing the results of a survey that I’d pushed to have us do, the result of months of work, results which will shape what staff will do at the library for the next several years, so I particularly wanted to be there for that conversation. It was an excellent one, and I think better for having me there, so that’s all good. No regrets.

(And while I’m here, kudos to David J. Seleb and the library staff for being willing to do this kind of community survey — it’s new for our library, and it takes a little bit of courage to go out and ask the citizens: “What do you think we’re doing right? What do you think we’re doing wrong? How can we better serve you?” It’s like asking for an extra report card, or a work evaluation, that no one is actually making you do. It’s such a privilege, working with this staff and board. They are exemplars of civic service done with integrity, thoughtfulness, and passion, for the public good.)

But oh, I was tired. When I came home at 10 p.m., Kevin asked how I was, and I said, somewhat pathetically, that I’d been working since 7 a.m. straight through and I wasn’t done yet. I got myself some decaf tea and a slice of bread with beef curry, and went to go work on e-mails some more while he emptied the dishwasher and finished cleaning the kitchen for the night.

I’d had a long lunch yesterday with Lori, which was a friend lunch, but we’d also basically talked shop all the way through, for close to three hours, so we were both also intensely working. Writing craft issues, professional development questions, arts admin struggles. We’re in somewhat similar positions, career-wise, so it’s always valuable, those conversations. It was super-useful to me, and I love seeing her regardless, but it’s not exactly downtime, not in the way that chilling out alone with a fluffy book might have been. I need to be careful to schedule more actual downtime.

I finally went to bed at 11:30 p.m., trying to get vaguely close to 8 hours of sleep, still stressed about how much there was to do. But before I closed the computer, I e-mailed and cancelled two of the meetings I had today. A relief.

I’ll still work through that time, but I realized just the thought of needing to be directing people through meetings was more than I could cope with. So that was a good decision, I think. It’s okay to cancel things. It’s okay to move a little slower. Maybe if I keep repeating that over and over to myself, it’ll sink in.

Tonight, I’m be participating in a podcast (which I’m looking forward to immensely, _Our Opinions Are Correct_, with the fabulous Annalee Newitz and Charlie Jane Anders). That also eats some time, so today will be a long day.

Normally, Thursday would be my quiet day, but I’m getting a MRI tomorrow, so that’s undoubtedly a) contributing to stress generally, and b) going to eat an indeterminate amount of time. Maybe I’ll be done by noon and the rest of the day will be fine, maybe not, hard to tell.

The MRI is probably nothing — there was some oddness on breast exam last fall, and my oncologist thinks it’s almost certainly just remodeling as the structures heal and reshape themselves post-surgery / radiation. But they keep a very close eye on me these days, so I’m going to go in and let them poke and prod at me. I still have a little stress about needles, leftover from the year of chemo, so I should check and make sure I still have a Xanax left that I can take before I go in tomorrow morning. That usually smoothes out the whole procedure process.

February 12, 2015, was my first cancer log. I don’t remember exactly when I got the diagnosis, but somewhere right around then, so I count it from there. Which means that I’m almost five years out from diagnosis, which feels like a milestone to celebrate. Yet I’m finding myself weirdly reluctant to say so, to count it, esp. with this MRI tomorrow. As if I’ll summon bad juju by saying ‘cancer-free’ out loud.

I don’t believe in that kind of superstition, but you know, when I do tell people I had cancer and then quickly add, “I’m fine now,” to reassure them, I also do, somewhat compulsively, tend to knock on wood. Just in case. No need to take a chance on irritating the universe, right? Let’s not be presumptuous here…

It’s probably nothing. But if I can remove a little stress from this week by cancelling a few meetings, that’s probably a good plan. And I’ll remind myself that the reason I feel such intense urgency to work ALL THE TIME is a legacy of cancer, this sense of increased mortality, the need to get as much done as possible.

Margaret Treanor Frey and I have been working on a comic together. (She’s my college roommate, and sometimes it’s a little surreal how many parallels there are in our lives since then.) The comic is set in a village of retired adventurers, sort of like a tourist trap. They live on the crossroads between various dangerous realms, and adventurers are always coming through, seeking their fortune, and the villagers are happy to feed them, put them up for the night, sell them gear and maps that are guaranteed to lead them to the very best treasure, or your money back (assuming you survive).

We’ve been trying to come up with a title, and we finally settled on one in our phone meeting yesterday: “Assuming You Survive” (and big thanks to the FB folks who brainstormed titles with us, and Nikhil Trivedi who came up that!).

It’s funny, it’s sardonic, it matches the tone of the comic over all, which is light, but with an edge to it. We love it; I’ve just registered the domain. As we were finishing up our call yesterday, Margaret, who is also a cancer survivor, commented that she liked the title because it resonated with her personally.

We’re both in that space, she and I, the space of caveat, where every big plan we make, every idea we begin to implement, has a shadow behind it. We’re totally going to write this comic together, and it’s going to be great. (Assuming we survive).

Like that.

This is one of the main things I’m talking to a therapist about right now, how five years out from diagnosis, there are still long-lasting effects to having had cancer. I don’t want to let cancer (and this lingering shadow it casts) make my decisions for me. I don’t want to let it drive me so hard that I run myself into the ground.

If that happens, the cancer wins. We can’t have that.

*****

Diagnosis

The first needle is long, but no worse than the dentists,
a small prick in an unaccustomed place. Rat-tat!
Rat-tat! The biopsy sounds like the beat of a distant
drum, or, more sharply, a staple-gun, extracting
rather than inserting. Two days later, the breast
still aches and the results are in. Surprising. She
was so young. Is. Is, of course. At forty-three,
on the young side for this, but not outside the bounds.

The last lump we were sure was cancer:
benign uterine fibroids, only fertility-threatening.
Spurring a spiral of panic, months of weeping
about children not yet had. Perhaps responsible
for our finally having children at all. The pointed
impetus, the reminder that we dont actually have
all the time in the world. The odds are with us,
this time. Only one out of twenty won’t make it.
We have been lucky so far. Rat-tat. Rat-tat.

#serendibhome
#serendibwriting
#cancerlog

*****

Image credits:

1) self-portrait with mammogram, one of my sketches for my cancer / garden / romance book, _Perennial_
2) Ulen, our book dragon from “Assuming You Survive”
3) cancer cells multiplying, _Perennial_
4) Margaret’s piece, “Aloft.” “The very last drawing in my cancer exhibit series was a new me rising out of the body of cancer me.”
5) self-portrait with chemo port, _Perennial_

*****

(Daddy, try not to fret. It’ll be fine.)

Mental health / ADD note

Mental health / ADD note: I went to see a new-to-me psychiatrist this morning (whom I’ll call Dr. L.), for a couple of reasons. One, for ADD management, I wanted to talk about adding a micro dose of Adderall, to help ease the crankiness that tends to set in at 5 p.m. She was in favor, so I think I’ll be trying that soon.

(Interestingly, she noted that my Vyvanse was at a very conservative dosage at 20 mg., that going up to 70 was within the standard bounds, and so I might think about trying a slightly higher dose of that as well, and see how it felt. Maybe, we’ll see. Adderall micro-dose adding first, let that run for a while, see where we are.)

Two, I also have been feeling pretty darn stressed abut a host of writing career / arts admin / how I spend my time issues, and I was starting to feel like I could really use a neutral professional to help me sort it out.

I mean, I talk to you guys about it all too, and of course Kevin and Jed and various close friends, which is helpful. But a psychiatrist has a different framework, a different angle of view, which I think is also helpful. I got a bit teary twice in the session, which I think is a strong indicator that yes, I could use a little help getting to a more stable place on these things.

Good session, unfortunately expensive, as it isn’t covered by my insurance. I’m hoping we can find the budget to do at least three more 45 minute sessions with her, as I suspect that’ll likely be enough to help me sort through the current set of career issues. (And after that, maybe we can manage a once-a-month check in? That’d be good.)

Even in this first laying-the-groundwork session, Dr. L. asked me a couple of questions that I hadn’t even considered, so that was interesting and useful.

“Did your distractedness and difficulty with focus become more intense after chemo & radiation?” Huh. Maybe! I had honestly never thought about tracking that.

As a general note, I think:

• mental health is as important as physical health
• in an ideal society, all healthcare would be free
• healthcare cost would pay for itself in the happiness and increased productivity of its citizens
• healthcare should also cover massage, yoga, & meditation / mindfulness practices
• in that society, I’d love to see normalized that everyone gets a proper physical and mental health checkup annually, moving to quarterly or more frequently as one gets older and at need.

(Of course, also maintaining complete confidentiality, so employers, etc. can’t use any of that against you in this capitalist world we currently live in.)

In the old world, a good parish priest or rabbi might have served some of this function, but for the secular among us, I don’t think we really have anything else like it. A neutral, kind, professional, who only wants to help you be your best self.

That’s a great social good, surely.

Cancer log 209: Massages, and pondering a custom bra

Cancer log 209: Okay, so I think I need some custom bra advice. For everyday at home, I usually wear sports bras, which work fine for giving me sufficient support for comfort. Light ones for just hanging out around the house, more supportive structured ones for actual workouts.

But for work and events, I sometimes want a bra that isn’t going to flatten me across the chest. And if I get a regular bra, I find that post-lumpectomy, I’m just lopsided enough that the bras don’t hang right, and so I end up with weird shifting of the bra position such that I usually end up with a line on one side and not the other (mostly noticeable when wearing a t-shirt or tank, which I do pretty often).

It’s irritating, and I think the solution is to get a custom bra made, that would be different on right and left, assuming that’s a thing? I’m sure it’s stupid expensive, but I’m willing to invest in one of them, given that the alternative seems to be what happened to me in Seattle, where I tried wearing a very minimal bralette for a work conference, and while that avoided the weird lines problem, it also caused so much back pain that I ended up booking a massage to address it.

Given the tightness of my schedule, I ended up having not so many options, and got a rather expensive massage at the Four Seasons hotel a few blocks away. A bra that actually fit me would be cheaper.

The massage was, by the way, utterly fabulous, so I don’t quite regret it. I did a little steam sauna & dry sauna, and took twenty minutes to relax and read a magazine in the lounge area too, which had complimentary fancy tea (strawberry tulsi, yummy) and dried mango and apricot. I really needed the chill down time, as I was feeling quite harried.

The masseuse even convinced me to try a little sample of CBD soak, which I’m not sure I really believe is effective, but she swore by it, and since it was perhaps the best massage of my life, I was willing to trust her. I used half of it in a bath the next night, but I admit, I can’t tell whether the CBD soak really did anything, since the bath itself was helpful, as they usually are.

Anyway, long rambling post, but if you have information on how one gets a custom bra made, would love to hear it.

#cancerlog

Cancer log 208: Working in the waiting room

Cancer log 207: The nurses are vastly amused that I’m working in the waiting room, but honestly, if you schedule me for an 8 a.m. procedure and tell me I have to check in at 6 a.m., I have to assume I can squeeze at least an hour of work in here somewhere. That just makes sense, right?

I explained that I had a set of papers to get back that my students were anxiously waiting for, and I felt bad keeping them waiting any longer than needed. (I’d set an alarm to get up at 3:30 so I could finish the last four papers before leaving for the hospital, but I’m afraid when the alarm when off, I reset the alarm and went right back to sleep for another blessed hour.) The truth is, I probably would’ve been working regardless, but I do have a good reason this time.

The most recent nurse laughed and said, “At least you’re not under anesthesia yet.” She brought me a warm blanket — warm blankets from the nurses are one of the few lovely memories I have from my time in the chemo ward.

I’m also noticing the quality of the patient robes here — not only do they wrap all the way around in the back, so that when you’re walking down the hall, your ass isn’t hanging out for all to see (thank you!), but they’re in a sturdy fabric, not paper, and an attractive print that I would be happy to wear as everyday clothes. It’s funny, but it makes a difference, somehow.

Loyola is a good hospital, reasonably well funded, and it shows. I’m glad my insurance was willing to cover my treatment here — I’ve been treated at poorly funded hospitals in the past, and the doctors and staff do their best, but with inadequate resources, and the strain of that is evident.

I’ve been watching New Amsterdam, which is a new-ish feel-good medical drama about a hospital director who is constantly trying to buck the system on this kind of thing, and I wonder if it’s pure fantasy, or if any of the things he tries are based on real events and actions that were effective. The latest episode directly confronted the problems with African Americans and the widespread distrust of healthcare (post-Tuskegee, Henrietta Lacks, etc., as referenced in the previous excellent article I posted, about the face transplant). In that episode he ended up training barbershop staff to take blood pressures and prescribe hypertension medicine, under his supervision, which seems a little like a fantasy, but maybe not?

Our own library has started doing pop-ups into barbershops and laundromats, in an effort to reach underserved populations, which I’m really excited about — it was related to an idea I brought up on the campaign trail a few years ago, doing pop-ups in empty storefronts, and I love that they’ve transmuted my airy-fairy idea into something workable. I can’t wait to see how that develops, and if we actually do manage to reach a broader library patron population.

I do wonder what amenities they offer in fancier hospitals. Heated hotel-quality robes? A green smoothie upon awakening? Plush bunny slippers?

I’m okay with my cheerful yellow non-slip socks, though.

Cancer Log 206: Considering co-pays and health

Cancer log 206: Tomorrow morning at 5:30 a.m. (gah) I go in for an exploratory surgery procedure. They’ll be doing a D&C in order to recover a sampling of the endometrium to hopefully determine the cause of abnormal uterine bleeding.

In theory, I’m in early menopause (post-chemo), according to my bloodwork, so they’re fretting because once in a great while, I still seem to have a period. Which is probably nothing, but in case it’s something, it’s better than they catch it early and deal with it. With people who have had cancer, they’re extra-careful with screening such things, which I generally approve of. I am all for an abundance of caution.

That said, the lady from the hospital who called me to get my co-pay in advance (without which, they won’t do the procedure, apparently), said that it would cost $8000 (with anesthesia, surgery itself, recovery, etc.). So I am glad that my HMO co-pay is only $250.

And yet I can’t say that I’m glad I have insurance, because I just went and checked, and as far as I can tell, the same procedure in Canada, including the use of fast-acting anesthesia, is $347. The paper I looked at seemed to think the procedure should cost about $1500 in the US, which made me think I had misheard the phone lady, but then a google search indicated the national average was in fact closer to $8000.

Now, the Canadian paper doesn’t take into account hospital overhead costs, which do need to be paid for, so fine, that’s some of the discrepancy. I do think we should compare apples to apples.

But it does cover all the direct costs for the surgeon, the anesthesiologist, the nurses, the medicines used in the procedure, etc. And $347 to $8000 is a massive jump. I’m super-curious whether Blue Cross / Blue Shield HMO actually pays that $8000, or whether that’s a paper number there only for the patients without insurance, who have to pay it all up front. I’m guessing BCBS has negotiated a much smaller rate — maybe closer to $1500? Or less?

So you know, that’s some nonsense right there. American healthcare system = nightmare mess. Let’s fix it.

https://www.jogc.com/article/S0849-5831(16)31318-0/pdf

https://www.mdsave.com/proc…/dilation-and-curettage/d482fecf

For the record, if I didn’t have insurance, I would certainly pay $347 for this procedure myself. I would not pay $8000; I would skip the procedure, and hope it didn’t cost me everything in the long run.

Cancer log 207: Make appointments, get tests done

Cancer log 207: Nothing much to report yet — we’re in the ‘make appointments and get tests done’ part of the process, and since my oncologist (whom I met with this morning) agrees that it’s all probably nothing, there’s not a lot to do but work the problem.

It *is* irritating that Loyola has recently switched to a policy of scheduling 16 days out (to allow for insurance), so when the poor medical secretary was trying to schedule my MRI for me, she got all these questions from the other end about why she wanted it done quickly (because the doctor said so, because my doctor is awesome and thinks tests should be done quickly so you can catch things early if they’re there, which you’d think the insurance companies would also want, since early treatment is way less expensive than late treatment…).

The secretary got really flustered trying to answer the other person’s questions — “I’m not a doctor, I’m the staff person!” and ended up having to call back my doctor and have her write STAT on the order, which was not a great use of the doctor’s time either, being interrupted like that, probably when she was in the middle of talking to a patient.

I generally find inefficiencies super-frustrating, but this is the sort of inefficiency that costs lives. Not my life, not in this case, but how many tests will be delayed by these policies, meant to benefit the insurance companies? How many people will have their cancer caught critical weeks later?

How much money would America save, if we could just eliminate the profit-motive in medicine, and make healthcare the public good it ought to be?

I don’t know how to best attack that problem, but the Democratic presidential candidates had better be thinking hard about how best to achieve Medicare-for-all — or whatever they want to call it, I don’t care.

The linking of health insurance to certain higher-end jobs is an accident of American history, a painful accident we’ve all been paying for, for far too long. Time to end it.