Cancer Log 213

Nothing dramatic, just another routine screening MRI. I don’t mind MRIs, but my oncologist likes to get them with contrast, which means an IV needle, and I do rather hate that part; I still have a little needle phobia after the year of cancer treatment and all the needles. Still, screening is good, better they catch it early if it shows up again, so I can’t fault her for her diligence.

I’ll note for any locals undergoing treatment at Loyola that they make you strip all the way down for a breast MRI now; they used to let you keep sweatpants on, but not anymore. Maybe a COVID-related procedure change? Don’t know how widespread it’s likely to be, but it startled me, so mentioning.

Also, I don’t normally mind the MRI itself; I kind of zone out while the machine bangs on for an hour and often fall asleep. But now we do it with a mask on (they give you one that’s MRI-safe, no metal strip), and I found that slightly more challenging than normal. I *knew* that I could breathe fine, but I didn’t always *feel* like I could breathe fine. Did okay, but it required a lot of concentrating on other things so I wouldn’t think too much about my breathing.

Feeling moderately sorry for myself, so am tucked up in bed with a glass of wine and a British murder mystery on the telly. I do still have some grading to do, but I may set an alarm and get up and do it in the morning; after a long day of work + going in for the MRI (without even getting a Xanax beforehand to help with needle nerves), I’m getting to the end of my willpower reserves for the day, I think. See all my fuzzy, frazzled hair? That’s how I feel right now, down to my bones.

On the plus side, Kevin just reminded me that next week is spring break for UIC. I love teaching generally, but I will be very happy to take a break from prepping remote asynchronous assignments and recording lectures for my lit. class. Maybe I’ll just not think about the day job for ten days, and immerse myself in sewing and gardening and writing fiction. (And okay, a bit of politicking, because the election is fast-approaching.) That would be nice.

Rough Cancer Week

Two people close to us (both women not yet fifty) had surgery yesterday for cancer; both surgeries went well, as far as we know, but it was stressful all around, of course, and everyone involved is still anxious.

Then today, a good friend (just my age) died. We’ve known she was terminal for some time, and yet it still doesn’t seem real, especially since the pandemic meant that even though she lived just around the corner, I haven’t been able to go and visit her the last several months.

Valerie, I can’t quite believe I won’t get to talk to you again. That time we went out for wine, and we talked for hours, and at the end of it you asked if maybe I should go get tested for ADD? I owe you for that, querida. You were such a light in this world.

💔💔💔

(I don’t seem to have any good photos of us, or even of just her. I guess we were too busy talking to stop and take photos. Here is one when she and her family came over for board game night, which of course also came with potluck and lots of food. Here are two more, from Tired Moms’ Night Out meals. We would have eaten so many more meals together, if we’d only had time.)

Post from her husband, Rodrigo: https://www.facebook.com/valerie.dt.3/posts/5268973883175071

My First Seamless Repeat

My first seamless repeat, that I’m planning to enter in Spoonflower’s artistic vision contest. (It’s a little last-minute, because I have to enter by 3 p.m. EDT today, but if you have any suggested edits before then, please let me know!)

I wasn’t sure what to do for such an open-ended topic, and I’m still such a novice artist that I’m not sure what my overall artistic vision is. But this design is pretty personal to me, so I think it works.

During the year I was being treated for breast cancer (I’m fine now), I ended up thinking a lot about my garden, and about how cancer cells grow, and how unbridled growth can sometimes be a bad thing.

I wrote a romance, Perennial, about a woman who’s just received a breast cancer diagnosis, and meets a handsome man in a flower shop; their relationship evolves over the course of her treatment, and while I was undergoing chemo, I worked on that book and made little sketches to go with it — some botanical, some cancer-related.

In this fabric design, I’ve included scilla for early spring, that moment after a long winter when the ground is suddenly a carpet of blue. Spiderwort, because while some people think it’s a weed, it’s also sold in garden stores, and I find this prairie native beautiful — it’s always finding its way through the cracks in my paths. And anemone, because after three years of failing, I seem to have finally gotten an anemone to live through the winter.

So overall, this fabric is a meditation on cancer and spring. And as a bonus, the structures of the breast are included as well; they look like an joyous dahlia to me, flowers that bloom for a long autumnal season, after you might have thought the garden was done.

(Kavi helped me translate my scilla and spiderwort sketches to Procreate, along with one of the cancer cells, and then I took over from there. I’m getting better at the tech, though I still make TONS of mistakes, which slows me down. Ah well.)

((I do wonder whether anyone other than me would actually WANT a fabric with flowers and cancer cells on it, but hey, it’s supposed to be my artistic vision, so I suppose it’s fine if it’s just me.))

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.