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.

Published by Ciara

Ciara Xyerra wrote zines for the better part of two decades. She has a brilliant & adorable preschooler named Ramona & sews as much as she possibly can. She lives in Lawrence, Kansas with her boyfriend. She enjoys catching up on "The New Yorker", meatball subs, keeping it cranky, intersectional post-third wave feminism, dinosaurs, & monsters. If you have nothing nice to say, she recommends that you come sit here by her, so you can say not-nice things together.

11 thoughts on “uh…more on the cancer situation, to be honest

  1. First of all, I just have to say: what the ever loving fuck is wrong with people who think your uterus is more important than your life. Like, are you just some sort of incubator? And Ciara the person doesn’t matter? Holy shitballs.

    That’s a lot of information for you to take in, and I understand how you must be totally overwhelmed and not really feeling….real. Life is utterly shit and unfair, and sometimes even the most diligent and health-conscious get the bad end of the health stick. Which is just rubbish IMO.

    I can only hope the detailed handbook is a good indicator of the diligence of the team you will be working with. I’m really tempted to make a Colette Sewing Handbook reference here….but I’ll leave the jokes up to you 😉 You got me with the Deer & Doe comment 😂😂😂

    1. It’s less that people think I should just go ahead & let cancer kill me if the alternative is giving up the ability to have children. I think people are just confused about how serious cervical cancer is, since there is so much emphasis on early screening. Like I said in the post, it’s not unusual for a person to receive abnormal Pap results. Sometimes they have something called cervical dysplasia, which a doctor may recommend treating. It sounds scary & cancer-y to people, but can be treated & even cured with procedures that don’t affect one’s fertility, like LEEP or cryosurgery. I’m sure everyone reading this knows at least one person who has had this kind of procedure done. Maybe they’ve even had it done themselves.

      There’s this idea that cervical cancer can be avoided with screening & out-patient treatment of the occasional abnormal cell growth, & that if it does happen, it can be treated with those same out-patient procedures. People don’t realize how serious it is, & how aggressive the treatment has to be. There are lymph nodes all over the pelvic region, & if the cancer spreads into the lymph nodes, it can be dispersed throughout the body. Cervical cancer staged at 1A1 has nearly a 100% five-year survival rate, but the survival rate for stage 4 is only 15%. & that is WITH aggressive treatment, including radical hysterectomy, radiation, & chemo.

      Even I am having a hard time wrapping my head around how big a deal this is. I too was under the impression that early stage cervical cancer was really no big deal from a treatment perspective. I was like, okay, I’ll get the cancer-y part of the cervix scraped off, it’ll suck, but then back to regular life. I have known people who have been diagnosed with dysplasias who completely panicked & thought they were going to die any second, & I didn’t want to be that guy. I was like, please, LEEP is not exactly life-altering surgery.

      It’s one of those situations where the medical establishment focuses so much on how cervical cancer can actually be AVOIDED & PREVENTED with regular screenings that I just assumed everything would be fine as long as I went in for those screenings. People who get cervical cancer are people who don’t go to the doctor for like fifteen years, right? That’s the myth. It reminds me of when I was pregnant with Ramona & I developed pre-eclampsia. My OB told me that her goal was to get me to 37 weeks, which is technically “full-term”. That may have been her way of hinting that it might not happen, but since she didn’t sit me down & actually say, “There is a risk that you will have this baby very prematurely. Like, VERY,” I just kind of bopped along assuming that 37 weeks was a foregone conclusion, & maybe I’d even get all the way to 40. & instead, my condition deteriorated rapidly & I gave birth at 32 weeks. In retrospect, I should have known. You don’t get diagnosed with pre-eclampsia at 27 weeks & make it anywhere near 37 weeks. It was an insane miracle I got as far as I did, & that Ramona’s growth was never affected.

      I feel the same way about the cervical cancer. In all my history of abnormal Paps & various dysplasia diagnoses, everyone just kept saying, “Okay, keep up with your annual screenings,” & for whatever idiotic reason, I assumed that they would see & treat anything weird well before it turned into cancer. & it truly is a miracle that they caught it when they did. My Pap came back normal, & the only reason they went in for another look is because they happened to test me for HPV (which is not the standard practice), & when it was positive, they did a DNA type on it (even less the standard practice). They ordered a colposcopy out of an abundance of caution when the typing showed that my HPV was the high-risk cancer-causing type, & thankfully, the doctor saw something that gave her pause, so she did a biopsy on it, & then she did a second biopsy of the “transformation zone”. & THAT is where the cancer was found. It would have been so easy to just look at my normal Pap & send me off for another year (or three, which is the new American standard for normal Pap results). & in that time, who knows how much further it could have progressed? Really, who knows how long it’s been lurking in there, overlooked by other doctors? I haven’t had a cervical biopsy since 2005.

      I think this comment is longer than the original post, so I’ll wrap it up now.

      1. Thanks for explaining that to me. I think I have my sensor on high alert for people who talk shit to those with medical conditions which is why I misinterpreted.

        I guess in one way you’re super lucky that they caught it when they did? But also kinda scary that it may not have been picked up on with regular testing. If you ever want to vent about this stuff, feel free to shoot me a PM or email – I can’t exactly understand what you’re going through but I just watched my best friend go through treatment for stage 3 breast cancer, and let’s say it was a real eye opener.

        1. I actually don’t know exactly which type of HPV I had. All I know is that it was one of the high-risk strains, so 18 is a possibility.

  2. I totally understand responding with jokes. I do that a lot with EDS. Strange that no one laughs as much as I do….hahah.

    It’s a lot to take in, but I am glad that they are giving you a ton of information and are supportive of you during treatments or surgery with the hotel room. It’s an incredible service to offer that for free. That will be a great help to keep the important people near you when you need them.

    I’m glad you are on the mend after the blood infection. What a scary experience to go through. So many hugs.

  3. I’m a fan of the black humour too.
    I hope that the level of information and presentation of it, is a good indication of the detailed and personal care you will receive.
    There’s nothing else to say really, but sending every good thought your way. This sucks.

  4. Ciara, I’m so sorry. Please accept my sincerest wishes for your continued strength and good health. I admire your commitment to sharing what you can of your experience here, even in such a frightening time, so that we might support you, and perhaps even be more vigilant about our own health. With love and best wishes from a former penpal grateful for your friendship.

  5. Oh my god, a blood infection too! I am so sorry to hear that all this mess is happening. Just about three years ago, Ben had an MRI for stomach pain and they found a kidney tumor. Apparently, the only thing to do for a kidney tumor is get it removed because if you have one, they’re most likely cancerous. It’s not the same as people telling you not to let them take your fertility, but we definitely had a lot of people saying he shouldn’t just believe the doctor that the tumor needed to be removed, that he should get a second opinion, that he should get a biopsy instead, etc, etc. But the second opinion doctor was even more forceful than the first, saying that kidney tumors like his have a 90% chance of being cancerous, and our research said that doing a biopsy actually runs the risk of causing the cancer to spread. I understand people being wary of big medical interventions like surgery, but it was also really not helpful to hear stuff like that while we were just trying to deal with the knowledge that he probably had cancer and we’d had no idea. So he had it removed and it was cancerous. They said it was very early stage 1 and we were lucky to have caught so early through such a freak accident. I get a chill sometimes when I think of him not having that MRI that found the cancer and just having a tumor growing silently in his kidney. I really, really hope that yours has also been caught super early and that if it was any further along it wouldn’t have taken so much effort to find it. I hope these are all good signs. It sounds like you’re going to get awesome care, too, and I hope that everything goes well. I don’t believe in prayer or anything, but I’ve been thinking about you lots, for whatever that’s worth.

  6. I guess maybe it might be easier to fill out advanced directives when it all feels kindof unreal? That’s the only reason I can think of for hitting you with it right away. I would have thought they’d at least have a social worker sit with you and go over it.

    It sounds like you are handling this all amazingly. I’m so sorry that you have to go through it, but very glad that you’re in good hands.

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