Tuesday Premonitions. » « I don’t understand their objection to “shithole countries.”

CONFESSIONS OF A DEADBEAT BLOGGER.

[CONTENT NOTE: disgusting bodily functions and fluids are discussed and drawn (poorly).]

To my beloved Many Tens of Loyal Readers:

As you may know, in August 2018, our colleague Caine lost her battle with colon cancer. I was and still am devastated to lose my longtime (Pharyngula/SciBlogs-era) friend, FTB comrade-in-arms and sister trauma survivor.

What you probably didn’t know is that Caine and I shared something else in common: the exact same colon cancer diagnosis. She had that bomb dropped on her just a few months after I did. Unlike Caine, however, I am reticent – or chickenshit? take your pick – about exposing much of my personal life online. As much as I admire it, I do not possess even a fraction of the courage Caine did to write so openly about her life and her illness.

By December 2017, after my first four cycles of chemo and 28 doses of radiation, I was still blogging regularly. But cancer treatments had begun to take more (and more important) pieces of my life and myself away from me. Where writing used to “flow” for me, I was now finding myself blinking back at a blinking cursor. Ideas became jumbled, everyday words escaped me, my focus and concentration kept slipping. Writing coherently about anything of substance was (and still is) an often tedious and frustrating process for me. I naturally drifted away from blogging, and from social media too.

When Caine first wrote about her cancer, I reached out to her immediately and shared with her what was going on with me. We stayed tightly connected (privately). When we lost her, I lost my source of so much comfort and strength from the only person in my life who truly understood what I was going through. (I hope that I gave her some strength and comfort, too. I know I made her laugh at least once or twice.)

As the 1-year anniversary of her death is upon us, I find I would like to start blogging again. Not so much “in Caine’s honor,” but more like…in her footsteps? I mean that I would like to be more open about my health and my life. And yes, this is waaaaay out of my comfort zone.

To be honest, these new blogging endeavors of mine may turn out to be a total bust: nothing more than a bunch of cutting-&-pasting items of interest I find on the ‘net, maybe calling attention to worthy candidates, causes and clicktivism, perhaps keeping readers informed of nefarious squirrel activities. Or, you know, I might fizzle out completely (again). Like many things about my future, I don’t really know. I do know that I miss being a part of this community, and I would like to contribute again to the extent I am able.

So I then I got to thinking: what better way to tell the story of the past two years of my life than…a webcomic! Yes! Having never done one before, indeed having rarely even read one unless PZ or someone posts one? PERFECT.

Enjoy?

(large comic-type font) KOLON KAPERS! (/large font] A Very Graphic Story By Iris Vander Pluym | AUG. 2019 BEHOLD: a wrong and terrible drawing of a healthy female pelvis (lateral bisection). [IMAGE: silhouette of a female pelvis (lateral bisection) showing cartoonish organs labeled: small intestine, colon, rectum, anus, vagina, cervix, uterus, bladder and labia.] SUMMER 2017: I see my regular doc for symptoms consistent with colitis. He recommends I get checked out by a gastroenterologist. NOTE: I have no family history of colorectal cancers, and - besides drinking like a fucking fish - no real risk factors.AUG. 2017: At my very first colonoscopy, a mass is discovered. Biopsies, tests and scans confirm it’s cancerous (“adenocarcinoma”), stage 3. This means the tumor has already breached the colon wall and that local lymph nodes are also affected. Fuuuuuck. [IMAGE: same image as first panel, but added a cartoonish bright green tumor on the border of colon and rectum, plus smaller green shapes around the tumor representing affected lymph nodes.] SEP. – OCT. 2017: A chemo port is implanted in my chest and the next day I begin my first of four, two-week cycles of chemo (“FOLFOX”). In keeping track of my symptoms and side effects per my oncologist, I discover that existing emojis are woefully inadequate for chemotherapy patients. Thus I invent “chemojis” as needed. [IMAGES: 1) cartoonish puffy little orange colon with wide eyes, a teardrop and frown, labeled ‘COLON PAIN”; 2) brow and drab green spiky round shape with wide eyes and small red circle for mouth, labeled “POO SPLAT”; 3) white cloud-shape face with furrowed red brow, tightly closed eyes, teardrop and wavy line mouth, labeled “NO POO 4 U!”; 4) red cloud-shape face with wide eyes and frown, labeled “BLOODY POO”; 5) bright green circle face with teardrop and open mouth frown, labeled “NAUSEA NO BARFY”; 6) bright green circle face with tightly closed eyes and cartoonish vomit, labeled “BARFY”; 7) bright red circle face with open mouth frown and water droplets extending outward from forehead, labeled “HOT FLASHY”; 8), yellow circle face with bright red crown and forehead, teardrop and open mouth frown, labeled “HEAD ACHY”.]NOV. – DEC. 2017: Radiation targets the tumor and lymphs from four directions, guided by laser alignment with tiny tattoos pre-positioned around my pelvis before treatments began. The tumor and lymphs get hit from all four angles. But the beams pass through everything, unimpeded, until they hit the lead walls of the treatment room. I get 28 such treatments. [IMAGE: same image as second panel (female pelvis with bright green colorectal tumor and lymphs), with added crisscrossing semi-transparent bands representing four partially overlapping radiation.] To summarize this period: [IMAGES: series of “chemojis” COLON PAIN, POO SPLAT, POO SPLAT, COLON PAIN, BLOODY POO, POO SPLAT, COLON PAIN.]FEB. 2018: My surgeon cuts out the section of my colon containing my (now smaller!) Tumor and (now fewer!) Affected lymph nodes, plus a margin of (hopefully healthy!) Tissue. The remaining colon ends are then reconnected. He also gifts me with a temporary ileostomy, to divert stool while the reconnection site heals. It is the worst. Thing. Ever. (Well, so far.) Biopsy shows the margins were clean. In theory at least, I am now cancer-free. [PARTY HORN EMOJI] [IMAGE: same image as second panel (female pelvis with bright green colorectal tumor and lymphs), except tumor is much smaller and only three lymph nodes remain. A scalpel is pictured along with a line of stitches at the colon reconnection site. Also pictured on the far left upper corner of the drawing is a stub-like protrusion from the small intestine, labeled “STOMA (ileostomy)” covered by a beige, semi-transparent amorphous shape, labeled “exterior drainable pouch. FML.”]MAR. 2018: Two successive emergency hospitalizations for infection at the reconnection site leave me weak. MAY-JUN. 2018: Four more chemo cycles: we need to nuke the entire site from orbit...It's the only way to be sure. 👽 I am so sick and weak I cannot hold my arms up long enough to shampoo my hair. My sister washes it for me in the sink. From this point forward I rarely leave my home or even my bed, except for medical appointments. Need moar chemojis! [IMAGES: 1) round yellow face with droopy eyes and bags underneath them, furrowed brow and thin-lined frown, labeled “WEAK ‘N TIRED”; 2) round yellow face with heavy-lidded, bloodshot eyes, teardrop, water droplets emanating from forehead and wide open frowning mouth, labeled “WEAK ‘N SICK ‘N TIRED” 3) round yellow face with frown and teardrop, showing elbows bent with hands hidden behind lower back, labeled “BUTT HURTZ”.] Strangely, the chemo cures my high blood pressure. So much so that I now regularly pass out cold from low bp after changing postures, only delayed 8-10 seconds. Naturally I fall and injure myself a lot. Cardiologist says to heavily salt everything I eat, and also not to tell anyone a cardiologist said that. JUL. 2018: reconnection site appears healed, and my surgeon reverses the ileostomy! Praise science! Ah’s been cured! Still weak with lots of pain tho, plus bonus bowel incontinence. But not to worry! Quoth he: “pain will lessen and stools will normalize in a few weeks. Maybe three months.” My life: [IMAGES: series of “chemojis” WEAK ‘N TIRED, POO SPLAT, POO SPLAT, POO SPLAT, POO SPLAT, POO SPLAT, POO SPLAT, BUTT HURTZ.]AUG. 2018: I lose Caine, my longtime friend, FTB comrade-in-arms and sister trauma survivor. Caine got the exact diagnosis as me a few months after I did, and we had a similar treatment regimen. We stayed tightly connected (privately). She would write about or quote me (anonymously) on her blog (meanwhile I struggle to even think clearly, much less write). But ohhh man. Let’s just say we shared some very dark humor, right up to the end. I. Am. Fucking. Devastated. [IMAGE: single red rose.]SEP. 2018: By now, I should be DONE with all treatments and well on my way back to normal function. But no. The pain is worse - a lot worse. My surgeon just shrugs and says sorry, he can’t help me. I fire him. 😷 🔫 OCT. 2018: now I'm getting recurrent bladder infections, U.T.I.’s, and urinary incontinence too. New chemoji: [IMAGE: round yellow face with frown and teardrop, showing arms with hands clasped at crotch, labeled “PEEMOJI”.] Scans and biopsies show extensive “late“ radiation damage where beams passed through non-targeted tissue. Unlike the temporary radiation damage that occurs during or shortly after treatment and typically resolves itself, “late” radiation damage can can appear at any time from nine months to 30 years (!!!) later, and is typically permanent. At almost exactly nine months post-treatment, I'm diagnosed with “radiation cystitis” and “radiation proctitis.” I picture this: [IMAGE: same image as first panel (female pelvis with marked organs), with wide, greyish, semitransparent band across radiation path through non-targeted tissues, and narrow band of same across the colon reconnection site.]NOV. 2018: My oncologist sends me to hyperbaric oxygen therapy to treat the radiation damage. (It’s a thing! Who knew?) I do 40, two-hour “dry dives” at 2+ atmospheres pressurized oxygen. My bladder problems improve significantly, but alas, not the proctitis. However, capillaries in my retinas begin bursting, and I am now fairly blind. I am eventually put on a months-long regimen of regular (PAINFUL) laser treatments and multiple injections into my fucking eyeballs. (For those keeping score at home: yes we are now treating the side-effects of treatment for the side-effects of treatment for cancer.) I fall and injure myself even more now. Meanwhile, pain at the reconnection site is still increasing - aaand my goddamn period starts up again, after more than two years absence. Super. DEC. 2018: I go to get this menstrual bullshit checked out. My new “gynecological oncologist” can barely open her speculum, and cannot get a pap smear because my upper vaginal and cervical tissues are so destroyed by radiation. [round yellow face emoji with wide eyes and tiny frown 😳] That's no moon…it's a space station! That’s no period...It’s ulcerated reproductive organs! Now I picture this: [IMAGE: same image as first panel (female pelvis with marked organs), with dark, dirty smudges, bleeding wounds and semitransparent red splotches indicating inflammation across radiation path through non-targeted tissues, and inflammation and bleeding at the colon reconnection site.]JAN. 2019: I get myself a “palliative care specialist.” OMG you guys! Everyone should go get one right now! At 360+ mg of morphine per day, the pain is almost bearable! Also I am sooo freakin’ high! [long horizontal line of emoji pill capsules, followed by red emoji exclamation point 💊💊💊💊💊💊💊💊💊💊💊💊💊💊💊💊💊💊💊💊💊💊❗] I also hire myself a new surgeon. A ladysurgeon. MAR. 2019: my new ladysurgeon BFF performs a laparoscopic exploration under anesthesia (“EUA”), and provides me with... another motherfucking ileostomy! Fuck! But! The pain vanishes, slowly but surely. I wean off all pain meds. SUMMER 2019: Ladysurgeon BFF orders me to take the summer to relax and go on vacation. Naturally I head to Duluth to meet up with PZ & Mary for Mexican & Margaritas. Hey, doctors orders! What else could I do? [purple smiling devil face emoji 😈] [IMAGE: same image as first panel (female pelvis with marked organs), with stub-like protrusion from the small intestine on the far left upper corner of the drawing, labeled “STOMA (ileostomy)” covered by a beige, semi-transparent amorphous shape, labeled “exterior drainable pouch. FML. again.” Across the radiation path through non-targeted tissue, fewer and lighter smudges and wounds are pictured, and red inflammation is much subtler and markedly reduced from previous image.](large, hollowed out, comic-type font) INTO THE FUTURE. . . (/large hollow font) [IMAGE: cartoon-styled eye.] FALL 2019: Another EUA surgery is planned for September to reassess / confirm the extent of tissue damage via laparoscope (with biopsies). Provided she finds nothing has worsened, my ladysurgeon will then schedule a big fucking surgery: 1) she and her team will redo my colon resection (re-resection?) Connecting non-radiated healthy tissue, then cut out radiation-damaged tissue at and around the original reconnection site; while 2) simultaneously a gynecologic oncology surgeon and his team - along with a plastic surgery team - will attempt to give me, and I quote, “some sort of vagina.” (I don’t know if there’s a catalog I get to pick it out from or what, but I'm hoping for a leopard vagina, because that is fucking badass amirite?) [IMAGE: photograph of magnificent adult leopard.] And I would know from badass. LOLI am still weak and I tire easily: it’s like I unexpectedly hit a brick wall and I have to rest right now. The fucking ileostomy is the bane of my existence, and will remain in place through my upcoming surgeries and for an unknown period (months) afterward, until I am healed and recovered – that is, IF I heal and recover. (Some potential outcomes are too much for me to contemplate right now.) I do understand that if after the EUA it turns out we’re a go for the surgery as planned, there will be only enough healthy tissue to attempt to fix all of this once. I am also keenly aware of some cognitive changes (short-term memory loss, inability to focus and concentrate, much slower average times on my Sudoku app, etc.). No one can really say whether these effects are from traumatic stress, anesthesia, chemo, or some combination – or whether these effects are permanent. I would however like to blog again, at least occasionally, to the extent I am able. I hope you will indulge me, and forgive my sporadic absences as they are bound to occur. Oh! One more thing: DEATH TO SQUIRRELS 4EVAH! [round yellow face emoji with eye winking and tongue sticking out 😜]

Tuesday Premonitions. » « I don’t understand their objection to “shithole countries.”

Comments

  2. Pierce R. Butler says

    … finding myself blinking back at a blinking cursor.

    That’s steal-worthy: you still have your way-with-words!

    Good luck, and take care!

  3. says

    Short term memory loss and inability to concentrate are common symptoms of post-concussion syndrome.

    My usual way of dealing with memory issues is photograph everything. Carry your phone with you and take pictures. Never rely on memory, and use your phone’s scheduler if need be. When there’s only one source to check, it’s harder to miss, and the phone reminds you instead of having to check it.

    I haven’t watched TV or movies in years because I can’t sit and do nothing, I have to be involved. Limiting activities to 10-20 minute bursts can help. Make a note and come back to things later. I can give you lists of brain puzzles (websites and free software) if you like to help work up your thinking habits.

  4. Raucous Indignation says

    Iris! I had no idea. I hope you are well. I have generally withdrawn from posting on FTB after Caine’s passing. I’m still doing my own grieving, I guess. I planted a silver/fire maple in her honour along my driveway.

  6. kestrel says

    Oh yikes. Wow I am so sorry to hear about this… and I do hope your new Drs will help you out. I will make you some virtual bizcochitos and will also send consensual virtual hugs if you should want them.

    I too blame the squirrels.

    I enjoyed the webcomic, thank you!

  7. DonDueed says

    Sympathy and respect. Please blog when you can, we’ve missed you. Don’t let the fucking squirrels win! But first and foremost, take care of yourself.

    For what it’s worth, I can emphasize with the vision loss part. Glaucoma did it to me. Fortunately it’s mostly peripheral vision that’s affected so far, but it’s sad to know that once it goes, it’s gone for good.

  11. avalus says

    Oh Fuck Cancer!
    I missed you a lot as well and I really hope your new ladysurgeon does a magnificient job!
    It has to be the squirrels somehow!

    Also what chigau @9 said. We will be here.

  12. says

    Leopard vagina?

    I think if it were me, I’d do the jaguar vagina – I like the rosettes better than the simple spots. Of course, you do you! I won’t stick my nose in your vagina.

    Wait. That sounds wrong. I mean, I won’t stick my nose in your vagina, but, still, I … uh… Ooo, I better end this line of thinking before I get in bigger trouble!

    So! Blogging! That’s great! I’ll be around to read you as long as you want to write.

  13. says

    Thank you all, so much. ♥ I’m happy to see you all too – and that it appears no traitorous squirrel lovers have invaded the place in my absence. GOOD JOB EVERYONE.

  16. StevoR says

    OMFSM!! I had no idea and am so sorry to read this.

    Best wishes from me and, yes, FUCK cancer!

  17. voyager says

    First, welcome back. I’m sorry things are shitty.
    Second, I second your recommendation of palliative care specialists! (I was one and they’re a good resource.)
    Third, I like black humour. Nurses are weird that way.
    Last, can we keep the cute little European squirrels with the cute ear tufts?

  18. redwood says

    Iris, best wishes for a healthy recovery from whatever they end up throwing at you. Looking forward to reading anything you write, even comments on other blogs. You always say something interesting! I would say “Fuck Cancer!” but I’ve already gone a couple of light rounds with it and don’t want to piss it off.

  19. fusilier says

    I was pushy on Caine’s blog, and I’ll be pushy here. Seriously consider joining up with What Next? https://www.whatnext.com

    We are, _all of us_ cancer patients and survivors on that site, and we are all in this, together.

    fusilier, 8 years post surgery for prostate cancer

    James 2:24

  20. says

    I really am so glad to see you blogging again. I didn’t know and I missed you a lot. Only blog when you feel like you can, of course. But welcome back.

    I miss Caine, as well. She was so wonderful.

    And fuck cancer.

  21. ravensneo says

    Stage 3C breast cancer got me. I did not have as many poop splats but I love your chemoticons, I could have used them every day. I got chemo, multiple surgeries, and lots of radiation too, infections, burns, drains etc. I don’t want to tell my whole story here–I just want to tell you I am a bad ass female and started out strong and sassy. I was a whimpering lump a year later who couldn’t think straight. Yours hits have gone on longer. It took time, but I got my bad ass sassy back. And my thinking straight. I am telling you your bad and sassy and clear-thinking self are still in there. They just need some time away from the assault which I am willing you to have. I also had ladysurgeon she was the best!

  22. psanity says

    I’m so glad you’re well enough to consider blogging again. I have missed you and your bad-ass attitude so much. (Hm. There’s something there I think was not intended, but I think I’ll just leave it. So.)

    I will be showing your webcomic to my spouse, who will really love your emojis, also useful for someone with Crohn’s or ulcerative colitis who then undergoes chemo for stage 4 unrelated cancer.

    Spouse is ticking along, albeit at very low energy and with lots of aches and pains, after more than four years of this, and knowing it will continue until the time it gets way worse. We have readjusted our expectations. Alive is good. Iris, I am so glad you are alive. Please bask in the glow of our affection, and blog when you can. We’ll be here.

  24. mcfrank0 says

    Thank you! Nothing like listening to another cancer patient to keep things in perspective! I have analrectal cancer and went through the same 28 days radiation with two rounds of supplementary chemotherapy.

    No one told me the skin would fall off my butt!

    And with the remnants of the tumor and the hopefully temporary radiation damage to my anal sphincter, leaking stool prevented the radiation burns from healing. After several more weeks of misery, I gave in and agreed to a colostomy and three weeks later I am now sufficiently healed to tolerate sitting in a chemo chair for six hours. Yes, PET revealed that I am now Stage IV with active lymph nodes throughout my chest.

    In any case, I will trade minimal prostate involvement for the harrowing gyne problems you are experiencing. (I managed to ditch the Foley catheter post ostomy via FloMax. Between that and pain medication, antinausea, antidiarrhea, and steroids, I have a nice little collection of pill bottles going!) BRAVA on firing and finding reliable care providers. I worked in Healthcare IT and got some good recommendations ahead of time. Also, that 40 years of experience working with physicians and nurses really pays off.

    My colostomy is messy, but it sounds like a piece of cake compared to your ileostomy. (And ever so much better than the previous every two hour visits to the bathroom to use the bidet and change the menstrual, cum fecal, pad.) My external radiation burns continue to heal, and I hope to make MY first public appearance in six months (other than healthcare visits) by my birthday next Sunday as, for now, I have no actual symptoms from my metastatic cancer at all. It seems there we have some commonality — our current pain and limitations are now due to the treatments and not the cancer!

    Looks like I won’t have to use my typical close of “take care” as it sounds like you are doing a perfect job. It appears I need to add your blog to my set of bookmarks!

  26. blf says

    The mildly deranged penguin notes the request for “traitorous squirrel lovers”, and so went looking for some. She actually found a few, but there are problems. Some of them like horses, all of them like peas, and a few don’t like cheese. She doesn’t seem to have a specific plan — yet, anyways — to deal with that, spending the last several hours running around in circles and cursing all peas, squirrels, horses, and walruses. (Not liking cheese isn’t a problem per se as it means there’s more available.) However, this does mean your Welcome Back! squirrel-and-spider-proof cheeseboard will be further delayed…

  28. chigau (違う) says

    I just found some cute pictures of “squirrels”. Should I send them?
    and fuck cancer

  29. cherbear says

    I’m so glad to see that you are back, but so sorry about your diagnosis. I am hoping you end up kicking cancer’s ass.

  30. cherbear says

    I posted before I read below the fold. I hope your recuperation and recovery work out well, and you keep kicking illnesses, injury and radiation burns asses.