good cancer news

I saw the oncologist yesterday & got the best possible news under the circumstances: she was aggressive when she did my cone biopsy & took A LOT of my cervix.She thinks she got most, maybe even all, of the cancer with that procedure. There were a few iffy spots on the margins, & in any case, I have adenocarcinoma, which can be sneaky. To be on the safe side, we’re going to follow through on a simple hysterectomy (just cervix & uterus) in February. Assuming the pathology on that comes back cancer-free…I will be DONE! No chemo, no radiation! I’ll just follow up with my regular gynecologist once a year! Obviously no more uterus means no more kids, but I’ve been making my peace with that for the last couple of months.

I am still recovering from the cone. It’s going pretty well, but recovery is just harder than I expected it to be. I finally sent Jared out yesterday to fill my Percocet prescription because I’m having a hard time dealing with the pain. It’s not bad if I just lay around & do nothing, but the last week has been busy, with his family visiting us for Christmas. The oncologist took out the sutures yesterday & I’ve been kind of miserable ever since. Just imagine sutures in your cervix. No fun.

This news is a big relief though, & I’m finally starting to look forward to the new year a little more. There are certain things that are still terrible (like one big orange thing that starts with T & ends with rump, which is certain to kill us all & I probably actually 60% believe that to be legitimately true), but I’m trying not to dwell on that. At least that is terrible for all of us together.

Now that I have a more clear picture of what I am working with, cancer-wise, I am trying to put my life back together. Things really kind of fell apart in late October. Not just because of the cancer. Also because of the infection I got, which now looks to be maybe an especially vicious bout of acute bronchitis. I am still recovering from that too. I got an inhaler a few weeks ago, which is an enormous help. But then I also sank into despair after the election & haven’t been able to bring myself to follow the news, which is really unusual for me. I glanced at the headlines in the “New York Times” this morning & it said something like, “Putin won’t retaliate in such & such a way against Obama’s action,” & I was like, “Wow, I have no idea what is happening in the world right now.”

I decided to start a bullet journal in an effort to get back on the ball of being a semi-functioning member of society. Any bullet journalers reading this? Holler at me, because this is my internet rabbit hole of choice right now. I first heard about bullet journals a couple of years ago, probably not too long after the entire concept was “invented”. But I found the whole index aspect wildly intimidating & was like, “Whoa, that is way too complex for me.”

Fast forward a couple of years & you don’t see me exactly having my shit together, do you? A few weeks ago, I made a coffee date with someone & then…just forgot about it. I don’t know what the hell I was doing instead, but whatever it was, I had let my phone die, so my coffee companion was calling & texting me & I had no idea. She legit thought I had to be in the hospital or something. Clearly, I need a more functional system that my current set-up of “write stuff down on the backs of envelopes & then forget & recycle them”.

So I’m taking the plunge. I’ve been experimenting with it a bit in a starter notebook & it’s just a really intuitive system to me. I’m actually writing things down! Like invitations Ramona is getting to preschool birthday parties, & library book due dates! (Let’s not talk about the fines I accumulated this year by forgetting when my library books were due & being too sick to walk to the library. I learned that the library cuts off access to your account when your fees get above a certain number. You can’t even renew books until you pay it down.) It’s really nice to have one central dumping ground for everything from people’s birthdays to ideas for projects I want to sew to books I’m reading to reminders about feeding the cat.

I’ve never been a big fan of pre-printed plannners/journals/whatever because there are always “features” I don’t use just taking up valuable real estate, & all the pre-printed lines & boxes are always a weird size for my extraordinarily tiny handwriting. With a bullet journal, I get to include what I’ll use & jettison the rest, & customize it to my own requirements. There’s the option to get all cute with it, with stamps & fancy headers & stuff (which I enjoy, to a certain extent), but ultimately it’s just about functionality.

So don’t worry, I don’t have plans to transform this blog into nothing but shills for acrylic stamps & photos of elaborate weekly layouts that take an entire afternoon to draw. Not that I am above admiring those things online.

I’m also not going to do any of those “top five” round-ups that are so popular in the sewing blogosphere. But I am hoping to be more on the ball with this blog in 2017. Not only do I still have garments I made as long ago as May that have yet to be blogged (some of which have been photographed & everything! I just need to write the posts), but I also have a million comments I’ve never replied to. I just want to thank everyone who reached out to me after the cancer diagnosis. I was literally overwhelmed (in a good way) by support. I’m really sorry if I never personally acknowledged your words. I will try to do better.

achievement unlocked: Ramona’s birth cross stitch

I’m still alive! I’ve just fallen deep down the cross stitch rabbit hole. This is my latest creation:

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It’s based on this photo of Ramona’s birth:

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Let the record show that Ramona is sitting next to me as I write this. She looked at this photo & said, in a very concerned voice, “Mama? What am I covered in in this picture? Is it…red sauce?” Yes, baby, it’s red sauce. Nothing but a bit of marinara.

I stitched this on 16-count Aida using 75 colors of floss. It took roughly 250 hours. “How is that possible?” you may be wondering. “Didn’t you just learn how to cross stitch last month?” Yes, I did just learn to cross stitch last month. I’ve just gotten really, REALLY obsessed with it. It’s an amazing anxiety management tool, & I have had a lot of anxiety lately. I was stitching literally ten or twelve hours a day.

I’m pretty pleased with the way this came out. I’m not 100% happy with the flower border, which I kind of freehanded. But I really like the numbers, which I also freehanded, & the image itself turned out well.

My goal is to cross stitch a photo of Ramona every year from her birthday. I’ve already started on the image of her first birthday. I’m doing a few things differently with the new project, based on what I learned from this one. I started the birth project in the middle of the cloth & worked outward. Apparently I prefer the “cross country” method of cross stitching, working one color at a time, instead of plodding along row by row, switching colors as necessary. For a project like this, row by row would have been nightmare-ish. There were sometimes as many as fifty different colors in one little ten-stitch by ten-stitch square. I don’t trust myself not to get a bunch of parked threads tangled into a giant mess, so I’d rather just work one color at a time, even if it requires more counting & thus greater risk of accidentally stitching one row or column off (which did happen several times).

Since there’s so much counting involved, I drew out a grid on my new pattern & numbered each ten-stitch by ten-stitch box. I drew a corresponding numbered grid on my Aida cloth using a Frixion marker. (The lines disappear with the touch of a hot iron.) So this way, I can be like, “Okay, there’s one stitch of color number 986 in box 17, two up from the bottom & four to the right.” I don’t know if this makes sense, but it really does make the process a lot faster & easier. I can sit & carry on a conversation or watch a TV show even while I’m working on a ridiculously complex 75-color 70,000-stitch project.

I also added the extra step of scanning the pattern prior to each new color & making list of all the boxes that need that color. It’s a little more prep work, but it makes the stitching go faster because I can just consult the list & go, instead of having to scan each box, stitch, scan the next box, stitch, forget if I finished the last box, re-scan, etc. I guess some people use the double highlighter method, but my lists work for me, for now.

I’m also working on developing the habit of stitching without using knots. Knots are a no-no in cross stitch. They distort the fabric & make things lumpy, & especially for a complex project, the knots can really get in the way of adding new colors & maintaining even thread tension. This is a big departure from the kind of hand-stitching I’m used to, but I’m getting there.

& with the new project, I’m also working on parking my stitches if there is more than a five-stitch gap between stitches in the same color. Cross country stitching is totally my jam, but running the too far across the back of the project is a waste of thread, & it can also create too much bulk on the back of the project & cause difficulties as stitching progresses. For example, I had run a lot of brown thread across the back of the birth project while I was working on the outline around Ramona’s head. When I added the off-white thread on her forehead, some brown fibers got pulled through. It’s barely perceptible. I’d probably have to point it out before anyone else, especially someone who doesn’t cross stitch, noticed it. But I see it, & I’d prefer to avoid it, so I will be more patient about parking stitches.

I also decided to experiment with the order of colors added in my new project. With the birth project, I just added whatever color I wanted whenever. I worked from the middle & didn’t necessarily finish a color all in one go. But this time, I am trying to finish off each color before I move on to a new one (easier said than done with literally thousands of stitches in a project), & I’m starting with the darkest colors & working toward the lightest. I’m hoping this will make the lighter colors pop more, & also reduce the possibility of the lighter threads getting a little grimy before the project is completed.

I’ve been really anxious because I had my first cancer surgery in mid-December. It all went pretty smoothly & I am recovering pretty well, but obviously this has all been really stressful. I’m seeing the oncologist tomorrow to get the results. Hopefully we will be able to definitively stage the cancer based on that surgery & decide on treatment. It fucking SUCKS that I am going into 2017 with this whole cancer thing hanging over my head (along with everything else, like Trump), but it will be good to have more information & a plan. Best case scenario: the cone biopsy showed clean margins, the cancer is mostly likely limited to the cervix & endocervical canal, I can have a hysterectomy & we’re pretty much all good. But if the margins are not clean (meaning the portion of cervix they took was just part of the tumor), we may have to do more imaging to see how invasive it is, & I may have to have chemo &/or radiation to try to shrink things down. I don’t know. We’ll see.

 

ISave

achievement unlocked: “fuck cancer” cross stitch

I am still deep into my newfound cross stitch obsession. Here’s a sampler I finished last week:

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It’s pretty thematic for me right now, as I am dealing with cancer. My first surgery is next week, assuming that I am able to maintain my health between now & then. I’m STILL not over the infection I got back in October, though I am on another round of antibiotics & have been prescribed an inhaler that helps a lot. Of course it’s cold & flu season, & I have a child in preschool, & the cancer is compromising my immune system to a certain degree, so…I am also fighting off a cold. The oncologist wants me to be completely asymptomatic for 14 days prior to surgery, since they will be using general anesthesia. I’m kind of like, “Um, I have a four-year-old, I don’t think I am staring down the barrel of two weeks of perfect health for at least another five years or so.”

Anyway, the next surgery is for diagnostic/staging purposes, to see how invasive this whole thing is. I will also mention that a friend set up a YouCaring fundraiser for us, which was really sweet & thoughtful of her. We don’t have any family in Kansas, & although local friends have offered to pitch in with child care & meals, we could really use all the help we could get. So here’s the link, in case anyone reading this wishes to contribute (no pressure): https://www.youcaring.com/ciaraxyerraandjaredtaber-709729.

So! The cross stitch! I wouldn’t call this an “original design,” but I did do my own thing with it. I took a flower motif that I liked & uploaded it to an image editing program. I removed the text & substituted my own. Then I ran the edited image through an online program that converts images to cross stitch patterns. It lets you set your own options as far as cloth count, size of the finished image, how many colors you want to use, etc. (More colors means more detail, but also more difficulty.) I used 16-count Aida & around thirty colors. The finished image is around 8″ by 7″. I wish I could tell you how many hours it took. At least forty. I don’t know if this is typical or if I am a really slow cross stitcher. I do know that I am blazing through A LOT of podcasts while I stitch.

I stitched this guy one color at a time, & took a photo after each new color was added. I wanted to convert the images into a moving image, like an online flipbook, but I am pretty technologically incompetent (last week I learned that there’s a strip of plastic film you have to remove from your toner cartridge before you put it in the printer–who knew?) & couldn’t figure out how to do it. So…time for a photo dump!

& yes, I have already started my third project, which is very slow-going. It’s a portrait of Ramona, & employs 75 colors. Jared made the excellent point that I shouldn’t rush the project, since I will just want to start another one immediately. He’s not wrong.

Speaking of Ramona, she turned four last week.

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Here she is as a newborn. Look how tiny she is, compared to the nurse’s hand! For anyone who doesn’t know, she was born two months premature because I developed severe pre-eclampsia. She was pretty big for her gestational age: 17 inches & 4 pounds, 11 ounces. But obviously that’s pretty small compared to a full-term baby. She was in the NICU for a month.

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& here she is on her fourth birthday! She is now forty inches tall & weighs 42 pounds–bigger than most girls her age! She can do basic math (on her birthday, she kept telling people that she was 22 because “22 is two 2s & two plus two is four!”) & is constantly asking us how things are spelled. She can ride a two-wheeled bike & loves to play soccer, basketball, & T-ball. She has recently had tantrums because she wanted salad with dinner & we were out of lettuce, & because her cruel father took her to the toy store instead of the library. What a monster.

& in case you are looking for some good stories about cancer treatment, I have a few. I had to go to the Cancer Center last week for my pre-op appointment with anesthesiology. During the health history portion of events, the nurse asked me, “Have you ever been diagnosed with cancer?” I just wordlessly gestured around at the fact that we were sitting in a CANCER CENTER.

Anesthesiology wanted me to follow-up with my primary care doctor regarding this lingering infection situation. It’s worth mentioning that I get my insurance through Medicare, due to disability. I am 37 years old & I like to imagine I perhaps look a bit younger than my years. At doctor appointments, they have to make a note of why a person is receiving Medicare: age, disability, or renal failure. I think those are the three options (though wouldn’t renal failure qualify as a disability, no matter how old you were?). On this day, the receptionist looked me straight in the eye & said, “& you’re on disability due to age?” No shade on my 60+ friends, but I do have a couple of decades before I join you there. So that was fun.

I’m also having to introduce myself to a lot of new people (doctors, nurses, receptionists, etc) & all of them are like, “Ciara Xyerra? Your name rhymes?” (It’s pronounced See-air-uh Zee-air-uh.) & I’m like, “Yeah.” & they ask if that is really what my parents named me, & I have to confess that I changed it myself when I was 25 (Ciara is my given first name, but I changed my middle & last names), without stopping to consider that I may someday have to get cancer treatments with ridiculous rhyming name.

achievement unlocked: feminist cross stitch

I waffled on giving this project an “achievement unlocked” headline because I don’t know if it qualifies as a “sewing project” per se…So, as a quick browse through the archives will make clear, I haven’t been sewing a lot in the last few months. Especially since the whole cancer diagnosis, I’ve been pretty tired & having a fair amount of pain. Whether it’s actually related to the cancer, or the anxiety around the cancer, or the blood infection situation that I am still fighting off, or some combination of all three, I have been spending a lot more time in bed & lot less time with my sewing machine.

I’m in this Facebook group for crafty moms, & one of the women started a stitch-along for a cross stitch pattern. My mom did some cross stitch when I was a kid, & I have foggy memories of trying it myself when I was in elementary school. I can’t remember if I ever actually completed a project back then. Maybe a little bookmark or something, to earn a Girl Scout badge. (I would have thrown my own grandmother in front of a train for a Girl Scout badge. I am counting down the moments until Ramona is old enough to join up.) I didn’t really think about it again for thirty years, because most cross stitch you see is just really not my jam. Like wall hangings of Precious Moments characters with Bible verses. Um, no. I tried to get into embroidery a couple of years ago, because that seemed more “modern” & elegant. But it just didn’t work for me. It seems to require a level of visual creativity that is beyond my ken, & the “hip” ready-made patterns tend toward a rockabilly aesthetic that just doesn’t appeal to me.

This is the pattern that was chosen for the stitch-along:

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& here is what I produced:

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& now I am obsessed with cross stitch! It’s something I can do literally while I am laying in bed. It’s fairly easy to pick up & put down if a child suddenly summons you. The required supplies are very affordable–I bought everything I needed for this project for less than I’d pay for a single yard of fabric. & it sends me into that same flow state I get from sewing. I would sit there & stitch for an hour & suddenly come out of my happy stitching head space & remember: Jared doesn’t have a job. I have cancer. Trump is president-elect. Everything is fucking terrible but I just forgot about all of it for an hour.

Another thing I like about it is that it takes for-fucking-ever. Maybe I’m just really slow at cross stitching & I will get faster if I stick with it, but this sampler took me about forty hours. Maybe you are wondering how this could possibly be considered a good thing, when that is longer than it takes to make a pair of jeans from scratch. It’s good because lately I have kind of been wondering how many clothes I really need. I love to sew, & I love to sew clothes, but my handmade wardrobe is pretty full. I don’t really have any holes right now. I am able to dress head-to-toe handmade without even trying. Anything else I make right now would just be for the love of sewing…which is a GREAT reason to sew, don’t get me wrong. But I do stress sometimes about the expense involved. & the potential gluttony of having more handmade clothes than I could really wear in a month.

It turns out that cross stitch is a great way for me to express my stitch-y creative energy, at low cost, while I’m laying around in bed. Even complicated patterns are just a matter of putting the right X of colored thread in the right spot & building from there, which means it engages my attention just enough to be challenging & fun, without asking me to use visual skills I don’t really have. I can have hours of stitching fun without feeling like I am adding a mountain of material goods to my space.

I took some progress photos as I made this sampler, to share with the other ladies in the craft-along:

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The finished sampler is now hanging on my bedroom wall (even though Ramona asked me to put it in her room: “Mama, will you hang that in my room so it can be my most favorite decoration ever that I love so much?”–I declined only because she is in a big “all surfaces are canvases for my marker art” phase & I don’t want her scribbling on it during her quiet time) & I’m plugging away on a second sampler. I designed the new project by borrowing a pretty flower motif with a saying I didn’t love from another cross stitch pattern. I loaded it into Flickr & erased the text, & then added my own text & adjusted the colors a bit. I sent the updated image through an online cross stitch pattern generator. It’s pretty cool. It lets you choose the size of your finished project & it gives you lots of different options for how detailed you want your pattern to be. It gave me the choice of using anywhere from ten to seventy different thread colors (& it actually tells you exactly what colors you will need, which is handy). I went with something in the middle, & have been stitching away. I might try a portrait of Ramona next. I kind of want to do a cross stitched version of Ramona’s birth photo, despite the gore…

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Hard to believe that was almost four years ago. Her birthday is on Wednesday. When asked what she wants gift-wise, she says, “A circle, a triangle, & a square.” ??? I might just take her to the toy store & let her pick out a few things.

Any other cross stitch aficionados reading this?

the day after

I barely slept last night. I looked up election coverage after Ramona went to bed, expecting to wile away the evening enjoying a Hillary landslide. Obviously, that is not at all what happened. It’s just absolutely shocking. I know I live in a lefty bubble, being here in Lawrence, Kansas, but it absolutely blows my mind that so many people voted for hate: racism, misogyny, homophobia, xenophobia…It appears that Hillary did win the popular vote, which is some consolation, but it shouldn’t have even been close.

I cried for the first time since my cancer diagnosis. If the worst happens to me, this is the world I am leaving my daughter? She’s growing up in a country that has never had a female President, where women got the right to vote less than 100 years ago. She’s growing up in a country with a President who was caught on tape bragging about committing sexual assault! She’s too young to understand right now, but by the time the 2020 inauguration rolls around (assuming we still have a country then…assuming that we still have a world then & haven’t all been vaporized in a nuclear war over a Tweet), she’ll be eight. That’s old enough to follow the news & start developing political opinions. I remember that I was seven years old when I learned about abortion & decided that I support reproductive justice. This was my first little taste of realizing that some things affect women in unique ways, & that some people think we shouldn’t have the right to make our own decisions about our bodies. It was when I realized that I was a feminist. Reagan was President then. I just wanted more for my daughter.

Thankfully, she’s too young to understand what’s going on today. She has spent the morning sneaking up & tickling me, pretending to have sleepovers with her favorite toys, & learning about Eid al-Adha (a Muslim holiday). Right now she’s getting dressed to go play soccer in the yard.

The first part of my cancer treatment has been scheduled. I’ll be going in for a cold knife cone biopsy in mid-December. Hopefully this will provide us with all the staging information we need to move forward, & hopefully this cancer really was caught early. In the meantime, I am STILL recovering from getting sick last month. I’ve lost 15 pounds, I’m perpetually tired & dizzy, I have no appetite. & that means I STILL haven’t been doing any sewing. I did try to leave the house on Saturday, but I had to have Jared come pick me up because I wasn’t strong enough to do what I had intended to do (go to therapy) or walk home.

I have a lot of projects cut out & ready to be sewn, & I have all the supplies for some others. I really want to make myself a hooded denim jacket with faux-leather sleeves–an extra layer to wear that is a little more interesting than your standard hoodie. I want to make myself some more jeans, because the first pair I made myself are way too big now. I want to make a flannel shirt to wear over thermals, & I’m tempted to adapt my shorty overall pattern into an overall dress, even though I don’t tend to wear many dresses or skirts when the weather is chilly.

But mostly all I have been doing lately is reading & watching TV. I’ve blazed through several seasons of “RuPaul’s Drag Race,” which I had never seen before. I watched the first season of “30 Rock,” which I had also never seen before. I haven’t had a TV in like twenty years, so there’s a lot of stuff I’ve missed. It makes me feel kind of shitty to watch so much TV, but I don’t have energy for much else.

Ramona’s birthday is at the end of the month. She’ll be four, & for the first time, she kinds of grasps the concept of a birthday. We’ve gone to several birthday parties since she started preschool, so she understands that a birthday party involves playing & cake. Therefore, she wants a birthday party. Unfortunately, she was born on the last day of November, which isn’t generally great weather for playing outside, & our house is way too small to host an indoor birthday party. There are various spaces available for rent around town: the indoor play center, the train depot, the gymnastics center at Rock Chalk Park, the nature center. But all are $100+, which is about $100+ more than we have to spare. Jared has floated a lot of interesting ideas, like organizing a scavenger hunt downtown, or covering the entire living room in butcher paper & letting the kids go crazy with tempera paint. It’s just a challenge to come up with something feasible that isn’t a ton of extra work for parents (since Ramona & her friends are not quite at an age that permits drop-off birthday parties).

I also had big plans for things I wanted to make for her birthday: pajamas, a new quilt, a big felt wall calendar like they have at her preschool. I’ll be lucky to just get to the pajamas at the rate I’m moving. I’ll have a second bite at the apple with Christmas just around the corner, but December is going to be difficult due to the biopsy (some people say they felt all better within a few days; others say it took them a full six weeks to heal) & because Jared’s family is all coming to Kansas to be with us. Which, don’t get me wrong, is a very good thing. Ramona can’t wait to see them, & I doubt I will be in any state to travel for Christmas so soon after the biopsy. But it will still be a lot of socializing & a disruption of my current heavy schedule of napping, panicking, & watching TV on the internet.

I hope everyone reading this is getting through the day all right. Ramona observed, “Today is not a fun day,” & even though she doesn’t have a sense of the geopolitics afoot, I can’t disagree with her observation. We are moving into a situation that feels downright apocalyptic in some ways. I’m just trying to remember what Joe Hill said (& what I had tattooed on my wrist 15 years ago): “Don’t mourn. Organize!” I’m still mourning a bit though.

what does “in situ” mean?

Yay! Another post about cancer! I know most readers probably come here for sewing content. Hopefully, I will be back to the sewing soon.

But first, I need to talk about something kind of shitty.

I had my first appointment with the oncologist on Thursday. There were no surprises. She confirmed the diagnosis & reiterated the protocol for diagnostic & therapeutic steps. First up will be a cold knife cone biopsy “to rule out invasive cancer”. I’ll be put under “because no one is insane enough to do this while they’re awake” & she will slice a cone out of my cervix & examine it for cancer, to see how deep the cancer cells have penetrated. Some people with adenocarcinoma in situ stop there if it appears that the biopsy itself removed all of the cancer. This way, they can keep their uteruses & have more children if they like.

However, cervical adenocarcinoma can be sneaky. It can grow in a “skipping” pattern, so the outer edges of the biopsy are free of cancer cells, but cancer cells were still left behind in the body. This is what makes adenocarcinoma trickier to treat than its more common relation, squamous cell carcinoma.

& of course, if the margins are not free of cancer cells, that means there’s definitely more cancer lurking in there.

So my doctor considers a simple hysterectomy (removal of cervix & uterus) to be the standard treatment, even for adenocarcinoma in situ. Right now, adenocarcinoma in situ is my diagnosis. It is considered “stage 0,” & the oncologist repeatedly stressed the fact that the “in situ” part means it is technically a pre-cancer. I get what she’s saying: if it’s in situ, that means the cancer cells haven’t penetrated to the blood vessel level & there’s no chance it has spread. Adenocarcinoma in situ is apparently the one & only precursor to invasive adenocarcinoma, & it’s pretty much a guarantee that it WILL progress to invasive adenocarcinoma if I just kick back & do nothing. But at the end of the day, my feeling is, if I walk away from treatment for this “pre-cancer” missing body parts, I’m gonna go ahead & take the liberty of calling it cancer. #sorrynotsorry

There are other, more common types of cervical “pre-cancer” that can be successfully treated with cone biopsy, LEEP, or cyrotherapy. These treatments allow women to keep their uteruses & cervixes. Unfortunately, that’s not the kind I have.

We did talk about the possibility of stopping after the cone biopsy, so I could have another kid in a year or two. That’s not something Jared & I have decided that we definitely want for sure, but we’d been kicking the idea around. She said I would have to be closely watched (like, exams every two months), & that she still recommends hysterectomy once I’m done having kids. & that it’s really only an option if the cone biopsy comes back with clear margins. She also pointed out that I’m 37. Time would be a-wastin’ on the baby-having front even if I didn’t have this whole cancer situation happening. She was basically like, “Uh, if you’re gonna do it, do it now.”

I walked out of the appointment feeling pretty okay about everything. There were no real surprises, & I felt like she knew what she was talking about & was good at explaining things to me & making sure all my questions were answered.

But once I got home, I started wondering…is there a reason my diagnosis is adenocarcinoma IN SITU? Can they tell just from the testing they’ve done so far that this definitely is very early cancer, or is that the default diagnosis because those surface cells are all they have been able to access so far? She said the cone biopsy is diagnostic to “rule out more invasive cancer,” which is a phraseology that could be interpreted as, you know, “We’re doing that just in case, just to be on the safe side, but it’s probably nothing so don’t worry.” Had they actually seen something that justified that relaxed attitude, or were they just giving me the earliest possible diagnosis in the absence of more information?

So I called & asked. & the answer is: the “in situ” diagnosis is just the default in the absence of more information. Hopefully the cone biopsy will provide all the information they need to confirm the “in situ” staging, but it’s also entirely possible that it will turn up a more advanced cancer, which would require more radical treatment, such as a more extreme hysterectomy, radiation, &/or chemo.

Logically, that all makes sense. & I understand why they didn’t spell that out for me explicitly. Even an in situ diagnosis is shitty enough without being told, “This could turn out to be a lot worse.” They don’t want to scare people. & you know, it IS scary. Adenocarcinoma is no fucking joke. The five-year survival rate for stage 3 is only 7%. (The five-year survival rate for in situ is 92%, I think, but that includes everyone who dies of anything.)

I’ve been bopping along telling people, “It was caught early, it sucks, but it’ll be fine.” As it transpires, we don’t know yet if it was caught early or not. & my early exams & symptoms are not super-promising. I’ve been positive for adenocarcinoma in biopsies taken both on the cervix & in the endocervical canal. The cervical lesions are visible to the naked eye. I have troubling symptoms that could be evidence of more invasive cancer, & even symptoms that could be related to metastases to the kidneys & liver.

I am trying not to catastrophize though. Everything could be okay. I just had to take a day yesterday to do nothing & feel sorry for myself while I divested Ramona’s trick or treat bag of its Butterfingers. I’m telling myself now that there is fuck-all I can do about any of this, & that nothing is to be gained by worrying. So I’m gonna try to just put all of this stuff out of my mind for now & go back to having a normal life while I wait for the cone biopsy (which will probably happen in early December). & that means SEWING! I actually let Ramona talk me into buying some fabric specifically to make her a set of pajamas–a departure from my general philosophy of not sewing for people who grow out of their clothes overnight. She chose a bicycle print jersey & I think I’m going to use it to make a little henley shirt & some jogger pants with contrasting cuffs.

uh…more on the cancer situation, to be honest

Thank you so much for all the well wishes on my most recent post. I haven’t had a chance to go through & approve/respond to everything yet, but I’ve read every comment & it definitely helped buoy me through those first few shitty days after the cancer diagnosis.

One thing I didn’t mention in that post is that I caught a blood infection from the biopsy. So, every four hours, for all of last week, I would spike a 105-degree temperature. I actually went to the doctor specifically to get some antibiotics for the infection, but our wires were crossed & she thought I was there for the biopsy results. “I didn’t want to tell you that you have cancer on the phone,” she said. So it didn’t even hit me right away because I was so focused on trying to get treatment for the blood infection. By itself, it was bad enough that I honestly thought I might die. My kidneys were actually starting to shut down. So to be walloped with cancer on top of that…Not my all time greatest week.

I did eventually get antibiotics & am on the road to recovery. I’m mostly better now. I’m just trying to build my strength back up after basically not getting out of bed for an entire week. I lost eight pounds in four days. A few more brushes with septicemia, & maybe I’ll fit into the Deer & Doe size range, eh? Ho ho, I crack myself up.

I also have my first oncology appointment scheduled for this Thursday. I have to be seen at the University of Kansas Cancer Center, because I guess cancer treatment is another one of those pesky medical predicaments I keep getting into (like giving birth to premature infants) that cannot be accommodated in Lawrence. Luckily, we were able to schedule it for while Ramona is at preschool, & Jared doesn’t have to work, so he can drive me & help be my eyes & ears at the appointment, since I dislike highway driving & all the information might be a little too overwhelming for me to absorb on my own.

The nurse who scheduled the appointment was all, “We’re sending you an information packet. It should be delivered on Thursday.” I am not unfamiliar with seeing medical specialists, so I was expecting your standard medical history to be filled in & brought to the first appointment, maybe a map of the medical campus, perhaps a pamphlet or two: “Fun with Cone Biopsies” or “Is Surgical Menopause the Right Choice for You?”

Instead, I received an enormous, personalized handbook. Like, the cover was actually printed up to have my name on it. This shit is perfect-bound & the cover was professionally printed with my name! There are full-color portraits & dossiers on my personalized oncology care team–not just some shit with the head of gynecological oncology’s name highlighted, but like, full names & photos of the nurse & receptionist who will be working specifically with me. There are full-page, full color anatomical drawings¬† specific to my cancer diagnosis. There is even information on a hotel the center works with, which provides free lodging to patients & their loved ones who have to travel more than 35 miles for treatment (hey, that’s me! The center is 43 miles from my house).

& so much medical history to fill out, as well as pages & pages of informed consent forms. The University of Kansas hospitals are teaching hospitals, so they really want their patients to get on board with providing disease samples & stuff. They’re always looking for the next Henrietta Lacks, I guess. Let me tell you, I do not love having to sign a form acknowledging that I recognize that “medicine is not an exact science” & that “no one has made any promises about the effectiveness of my treatment.” Like, obviously I know that from a logical standpoint, but also obviously, when someone is treating you for cancer, you kind of wish they would say, “I know exactly what to do & it will definitely work & you will live to be 97.”

Also on that topic, there was a distressing amount of information on the hows & whys of setting up an advanced directive (ie, a living will). Oh, hey, mortality. I wasn’t really expecting to confront you until I was over 40, but I guess we’re gonna do this thing now.

I am also already hearing some pearl-clutching from people being all, “Don’t let them take your fertility!” (since the standard treatment for cervical cancer is hysterectomy). *sigh* My cancer hasn’t been staged yet, so I don’t know yet exactly what treatment will be recommended. It’s possible that I’m one of the very lucky ones whose cancer was caught very, very early & it can all be removed with a cone biopsy. It would still be challenging for me to become pregnant after that type of treatment, & any pregnancy I achieve would be more difficult & at higher risk of miscarriage. I would also be at higher risk of a recurrence & would require a hysterectomy once I was done having kids. That would be a best-case scenario as far as fertility goes.

If this shit is staged at anything above 1A1, hysterectomy would be the baseline treatment. Radiation &/or chemo could be involved.

I feel like maybe people get confused about this stuff because it’s not terribly unusual to have an abnormal Pap, & sometimes when that happens, there is some treatment, like LEEP. That shit is no fun, but it doesn’t compromise your fertility. Unfortunately, we are beyond “abnormal cervical changes” here. This is Cancer Country. LEEP ain’t gonna cut it. I still kind of can’t believe it, which is why I’m being a little silly & joke-y here. Did you know that only 30% of all cervical cancer are diagnosed in developed nations like the U.S.? That’s because women in developed nations have better access to cervical screenings so abnormal cells can be identified & removed before they turn into cancer. I’ve never skipped my Pap. I’m all about trying to keep that area healthy. I have a speculum tattooed on my arm, for crying out loud! But I got cervical cancer. I don’t know if there was a warning sign that was missed, a doctor that should have been more aggressive with treatment after an abnormal Pap (I’ve had a bunch), I don’t know. It just doesn’t seem real.