Billy

Posted on by tittumor

What if I had a guardian angel similar to Billy Eichner‘s character in Parks and Rec? I’m imagining him popping up throughout my life:

I’m in my room when I’m 23 and getting ready to go on date. “Your tits look great,” he says, and I jump and gasp in startlement.

“Damn it, Billy,” I yell. “I HATE when you do that.”

“Well, it’s just a shame that those perky little numbers are going to try to kill you,” he says as he flicks my nipple and then whips around and disappears.

He shows up when I’m 26 and says, “So you just got engaged, eh? That was dumb. Funny thing is, you’re never going to find anybody that you want to stay with. By the way, you should probably start laying off the carbs. Bye, bitch!” and he fades away.

Then I’m 36 and just rang The Chemo Bell and he shows up slow-clapping.

“Congratulations,” he says sarcastically, leaning back in a chair in the lobby with his legs crossed, a smug look on his face. “Your last cancer treatment, eh? Riiiiight,” he says as he dramatically rolls his eyes. I see him later at the Walnut Grill where my extended family is celebrating the moment. He’s sitting at the end of the table by my Uncle Mel and he mouths to me, “This food is shit.”

Can you even imagine how discouraging it would have been to have had your future revealed to you when you were young? Ugh. I’m a positive person who brings good energy to every space I enter, but I have always felt that something heavy would overtake me. When I was 20 years old, I had a dream that I was in a plane crash (at least, I think it was a plane crash; I know it was some sort of intensely fast-moving projection toward total nothingness). As I was hurled downwards, I thought “OK, here it comes. Brace yourself,” and when I woke up, I remember being sort of breathless and thinking that the dream had been a premonition.

I don’t think about death that often, but having Stage 4 cancer, I would imagine I think about it more than most 46-year-olds. I truly don’t fear it, and even though I love my life, I’m OK with it ending it early. Note: I have not been given any news that this will happen any time soon! I have lived a full life, and I will most likely die well before the average age, and I am OK with that. What pains me to consider is how my death will affect those I leave behind, but I won’t dwell on that now. I never dwell on it. It pops up from time to time, but I move past those thoughts. My brain is TOTALLY NORMAL in that it stays calm when contemplating cancer, but freaks the fuck out when it perceives negative judgement in a social setting. Because that’s a good use of energy…

Knowing my luck, I’ll end up dying in a freak accident.

“Did you hear about Jenny? She died.”

“Oh shit, that’s so sad. The breast cancer finally got her?”

“Naw, man. Fucking bear attack. She was unloading groceries from her car and a bear just straight-up ate her.”

“Damn, dawg. That is CRAZY!”

I am really lucky in that I have been able to stay on the same cocktail of cancer meds for almost five years now. Most of my Stage 4 friends have not been so lucky. I have been a part of a clinical trial that has me on Imlunestrant (which was FDA approved last September!) and Verzenio. Every three months I get an Xgeva shot (which keeps my bones strong). With these magic meds, my cancer has remained stable. In terms of my lungs, I have little pulmonary nodules, with some having resolved and then been replaced by other little guys that pop up sporadically. As of April 2026, “there are sclerotic lesions within the proximal right humerus, right proximal femur, right inferior pubic ramus, right sacrum, T12 vertebral body, left 10th rib, and left transverse process of the T3, vertebral body.” Eventually, these tumors will start to grow again, and/or new ones will emerge, but until then, I will enjoy my life and take excellent care of my body. I will refrain from consuming refined sugar and instead eat mainly lean protein and vegetables. I will work out regularly and use my down time to read and grow as a person instead of scrolling Instagram. HAhahaHahehAH (Billy just showed up and is laughing maniacally as reads this screen).

A young woman who attended the high school I most recently taught at (and who had just delivered the commencement speech at her university) died from cancer this past week, and that was hard to hear because I saw her last month (or maybe two months ago?) at the cancer center where we both receive treatment. She had looked good. She was thin, but her skin was glowing and her eyes were bright, and her mind seemed fully intact, so it was troubling to see the announcement when I opened Instagram the other morning. You can usually tell that death is imminent based on a person’s appearance, but that had clearly not been the case with Kate.

There was this middle-aged guy who used to get treatment at the same cancer center as me, and he was there every time I was; he must have received chemo every weekday. He always wore a Hawaiian shirt and light jeans, and he was always joking with the nurses and saying hello to everyone. One day, he was pushed past me in a wheelchair, and I could tell by his gray skin and vacant stare that he was a goner. He reminded me of Jack Nicholson in One Flew Over the Cuckoo’s Nest after he’d been lobotomized, and I knew that would be the last time I saw him.

When my friend Jen died of breast cancer, it was harder to hear that she had entered hospice than when she had actually died. We had been initially diagnosed and then experienced a recurrence at about the same time, so it was hard not to see my cancer experience as parallel to hers. However, I knew her death would come sooner than mine because she had had to change her medications frequently (her cancer was more cunning than mine and would always find a way to grow). I knew the last time I hung out with her that it would be the last, and that was one of the only times I’ve ever felt survivor’s guilt. We met at a coffee shop, and she was so thin, and her skin was gray, and her scalp was covered in soft fuzz, and there was a heaviness in her movement, and I knew that it wouldn’t be long. The day after she died, I took a Halloween costume over to my sister’s friend’s house, not knowing that she lived by Jen, and when I drove by Jen’s house, her little dog was sitting on top of the couch, staring out the window. That was sad as hell.

I can’t believe that I am old enough to have entered the period of a single-digit-year countdown to retirement. I have nine more school years left until I can pull a pension, and if this cancer takes me before I can reap the benefits of having been a teacher, I will return from the grave and haunt every school I’ve ever taught in. I will be an absolute menace of a spirit. Copy machine breaks down during finals week? That’s me. No internet? Me. School dismissal is two minutes away and the intruder drill goes off? ME. I feel like I’m going to make it to 50, but 55? I just don’t know. My fingers are crossed. It’s a crapshoot for anybody to leave their house, so props to us all for being brave enough to just be alive.

I taught high school English for 20 years, but I always hated grading essays, and I was frequently defeated by the apathy of teenagers, so after The Cancer Years and then The Covid Times and then The Next Round of Cancer, I found myself on the verge of a breakdown. I was miserable, and I knew I had to make a change. My (primary) plan (there were many) was to exit the high school English classroom and become the Gifted resource teacher at my high school. The person who had previously been in that position had told me that I should take her job when she retired, so I started the process of getting my Gifted credential (which requires 21 graduate credits). She retired early, and I was still working on my credential, so someone else got the job. When my sister told me that her school district had just created a high school Gifted resource teacher position, I applied for it. At the end of the second interview, it seemed like a done deal, but the position ended up being filled by someone in the district whose job I would then be offered and accept. This job had me teaching in a middle school Humanities program for exceptionally gifted students. I had to take two Praxis exams to become certified to teach English and history at the middle school level, and I worked harder at this job than at any other. The amount of planning and reading required to teach these courses was intense. I went from teaching just English to teaching English and history (from the Neolithic period to Vietnam). Even though the job required SO MUCH work outside of school hours, and the behavior management component was more taxing than being in a room with 17-year-olds who just want to quietly stare at their phone, I am glad I did it. Even though it was draining, it felt purposeful and rewarding, and I enjoyed the challenge. However, the school district changed its salary policy (in terms of how many years of service they would honor for an incoming teacher) so that if I had been hired this past year instead of the year before it, I would have made A LOT more money. Like, a whole lot more, and that was enraging, so I *resigned. I knew I was going to make a lot less money by moving to a new district, but the job I had applied for would not have required lesson-planning or grading or much behavior management, so I had planned on getting a part-time job to compensate for the loss in salary (I could have left work every day not feeling exhausted and therefore capable of putting in a few hours somewhere else). Also, I figured that since I probably had limited time on earth, I may as well like my job, even if it brought in less money.

*According to the MO Department of Education, I could apply to work in this school district after being away for at least one full school year, and then all of my years of service could be honored (if I were to be rehired, which is no guarantee, even though my performance reviews were great). I imagine that Billy would say, “So they want you to join the circus for a year and then reapply? DUMB!”

After a handful of incredibly stressful years in regard to work, I am happy to have secured a teaching job at a school close to my house where I plan to end my career on a high note. I’m ready to not be angry. I already feel like my life has taken on a new, more positive, calmer trajectory, and I’m ready to take all the lessons I’ve learned during the span of my career and put them to good use going forward. That is, if the cancer doesn’t get me first (then I’m coming back and wreaking absolute havoc on each student, parent, and administrator who ever pissed me off). I wish Billy would should up now and tell me what’s in store. Regardless of what he’d say, I’d continue to take the bull by the damn horns and ride out smiling.

Nolite Te Bastardes Carborundorum*

Posted on by tittumor

Hi! It’s been 419 days since I posted anything on the ol’ blog, so I figured I’d provide an update. I’m in partial remission, meaning I still have some tumors in my lungs and bones, but nothing new has grown since I started this Eli Lilly-sponsored trial three years ago. In fact, the trial just entered the “continued access phase,” which means that I no longer have to keep a pill diary, and now my oncologist (and not the trial coordinators), will determine how often I come in for bloodwork and scans. For the past three years, I’ve gone to the cancer center once a month for bloodwork, and every three months for scans (CT and bone). Now I may be able to go in every two months for bloodwork (and I’m not sure about scans), so I’ll save time and money.

To look at me, you would never know I have cancer. My hair texture is the main physical indicator that my body has undergone chemical changes (due to mucho medications and a lack of Estrogen). I used to have thick, straight hair. I could sleep on it wet, wake up and brush it, and it would look fine. Now it’s wavy and frizzy and thin. I recently got a keratin treatment, so it’s more manageable. I’m also heavier due to my post-menopausal metabolism. I should really work out more and eat fewer carbs, but I prefer eating out to working out. What I really want is for Eli Lilly to create a new arm of my trial that would put me on a weight loss drug (in combination with my aromatase inhibitor and CDK 4/6 inhibitor). I’d love for something to inhibit my desire to eat. Let’s see what happens to the cancer if I lose 50 pounds! I’m willing to risk it.

I’ve added Eliquis to my current list of meds. My scans in May showed a pulmonary embolism, so now I’m on blood thinners indefinitely. My oncologist thinks that a rogue blood clot may have formed after my port was removed (it was always clogged and never gave blood, and I’m not using it for infusions, so there was no need for it). The radiologist who removed it was my sister’s AP Physics lab partner about 25 years ago, so we joked about high school, laughing particularly heartily when he told me about some kid who liked to whip his dick out during after-school tennis practice). The blood clot was considered an Adverse Event by the trial overseers, so there was, for just a brief moment, the possibility of ending my trial participation. Thankfully, that didn’t happen.

Back in August a strange rash appeared on my right breast (the left breast is the tumor breast-although, when I had my mastectomy, there were precancerous spots in the right breast). It started as a small red spot with a tiny white pustule, but when I squeezed it, nothing came out. The redness continued to spread, so I went to urgent care (if it hadn’t been the weekend, I would have contacted my oncologist first). The urgent care nurse prescribed me an antibiotic and told me to contact my oncologist. The rash continued to grow in the next couple of days. It wasn’t painful nor itchy; there were no pustules, but it was warm. My oncologist told me to go to the ER, and I ended up spending five days in the hospital. I was fairly certain it was inflammatory breast cancer (which would have meant that my days were numbered), but my oncologist thought it was cellulitis. I received antibiotics via IV, but the rash continued to spread. An infectious disease doctor (my coworker’s cousin- we took a selfie, and I texted it to our shared connection) suggested a biopsy. Eventually, I was released and prescribed oral antibiotics. I had a biopsy done (I saw the surgeon at Billy G’s two weeks later), and the rash eventually disappeared. The pathology showed no bacterial or fungal infection. I had a CT scan while I was in the ER, and it didn’t show anything malicious, so who knows what caused the rash. It was considered another Adverse Event, and once again, there was brief talk of removing me from the trial. Luckily, however, I was allowed to stay on, but the dosage of one of my meds was reduced. This has led to fewer bouts of diarrhea, so for that I am grateful, but the dosage will probably be changed to its original number since that’s part of the magic formula that’s kept the cancer at bay for three years. Most of the stage 4 women I know have had to change their treatments due to new growth, so I am lucky that I have been able to stay the course for so long. My cancer “twin” died this past April (my plastic surgeon introduced us early on in my cancer battle because we were the same age and had a similar look and personality; she was, however, originally diagnosed at Stage 3 and HER2+ whereas I was diagnosed at Stage 2 and HER-, so her cancer was always more aggressive than mine). The cancer spread to her brain, and nothing could stop its growth. A stage 4 woman I follow on Instagram recently posted about her latest scans, which show that her liver is covered in cancer, and her lungs and bones have new spots. She’s been fighting for 10 years now and has had to change her treatment routine many times. I don’t know if she has any other options at this point.

I am a happy person who thinks about death a lot. I think I’ll die somewhere between the ages of 52 and 55. I am 44.

I started a new job in August, and it is going well. I hated teaching apathetic, phone-addicted 11th graders so much that I actually had a moment this past December where I was hoping that my scans would show new growth so that I could have a valid excuse to stop going to work. It was then that I knew I had no choice but to pursue other professional options. I was originally going to try a different industry, but I figured that starting a new career as a Stage 4 cancer patient in her mid-40’s was a bad idea. I now teach exceptionally gifted middle schoolers, so I teach high school-level content to 11 to 14-year-olds who haven’t yet become addicted to their phones (and I have 35 students instead of 100). Also, I teach history as well as English, and even though it requires a lot of preparation, I’m enjoying re-learning content that I studied years ago. It’s a Humanities course, so it blends subjects. For instance, the 7th graders read Shakespeare’s The Tempest while studying The Age of Exploration, so they read the play with a colonialist lens. (Here’s an example of why I like teaching this age group: one 7th grader, who described the character Gonzalo in The Tempest as a “yappuccino” because he talked a lot, was really excited to use her free time to design a poster for a fictional coffee shop called Gonzalo’s (featuring a drink called a Yappucino). Middle schoolers are a lot, but you can give me their intensity over a 17-year old’s apathy any day.

Time to walk my dog, so I’ll wrap this up by promoting the 3rd annual BOOBash, the fundraiser I co-plan with my dear friend Tanya. It’s on October 18th at Work & Leisure, and funds raised will be donated to Gateway to Hope, a St. Louis organization that supports breast cancer patients. It’s a costume party with a fabulous silent auction, and I think you should come, OK? OK, I’ll talk to ya later. Have a great week. Don’t let the bastards grind you down.

*Ron: I know that’s not a real Latin phrase, ya nerd.

“That’s life. It’s all change.”

Posted on by tittumor

Did ya’ll see the Barbie movie? I loved it. I thought it was funny and bizarre and poignant and unlike anything I’d ever seen before. I even shed a few tears during the end scene with Ruth Handler (“I want to be a part of the people that make meaning,” The Blonde One said, “not the thing that is made.”) Me too, Barbie. Me too.

It’s been a big year since we last talked (the years are always big, though, right?) I’m on cycle 26 of the trial I’m participating in. I go in once a month and have bloodwork done and meet with the study team and update them on my symptoms. To recap what this trial entails: I’m taking Abemaciclib (known commercially as Verzenio) and a trial medicine which is a SERD (selective Estrogen receptor degrader). I used to get an Xgeva shot every month (to keep my bones strong), but now I get it every three months. I used to get a Zoladex shot every month (to keep my ovaries turned off), but I had my ovaries removed in April (ovaries make Estrogen/Estrogen feeds hormonal cancer). Unlike my other cancer-related surgeries, the oophorectomy (pronounced OH-OH-Fur-Ect-Omy) was quite anticlimactic. I didn’t have that enthusiastic urge to soldier-up and get in there and get it done like I experienced before my mastectomy. It was more like reporting for KP duty. There was minimal pain post-surgery, and I had already been experiencing the side effects of no-Estrogen (hot flashes, weight gain, hair thinning, fatigue, joint pain, irritability) for a while due to the Zoladex, so that was nothing new.

I have scans (CT and bone) every three months now, and my latest scans in June showed that everything is still stable (tumors have remained unchanged in size since the fall of 2021). In my lungs, I have a 3 mm sized tumor in my right upper lobe, a 4 mm sized one in my right middle lobe, and a 5 mm one in my right lower lobe. In my bones, I have tumors in my T12 vertebrae, sacrum, right femoral neck, pubic bone, right posterior second rib, and left lateral tenth rib. I don’t know how long this medicinal cocktail I’m consuming on a daily basis will keep everything stable, but (obviously) I hope it keeps doing the trick. The three other metastatic women I know personally (who are still alive) have experienced brain metastasis, and they’re doing fairly well, so that’s encouraging. So place your bets now: will it be my brain or my liver that takes the next hit? Will I make it to 50? I’m 90% certain I will (I’m 43 now). Will I make it to 55? (which is when I’m eligible for retirement) I’m not so sure. And THAT is what enrages me. I’m going to have spent all these years grading these essays (my least favorite thing to do), and I won’t get my early retirement?! I’ll get an early death instead? Enraging! But besides the cancer (and the essay-grading), my life is great. I can think more objectively about death now.

I met with an estate-planning attorney back in November and am squared away for what will happen to me and my stuff and my money when I die. I don’t think I’m going to die any time soon, but I think it’s smart to have a plan in place, especially when you have Stage 4 cancer. I figured I may as well do the planning while I feel fine and the disease is stable. Plus, you never know when old Joe Black will come a-knockin’, even if you’re healthy. It’ll be so much easier on your loved ones if you leave them with directions. Around the same time that I did the estate-planning, my rock-climbing-incident lawsuit was finally settled (in my favor), so that was a nice way to end the year. All’s well that ends well, right?

My ex-boyfriend and I used to have this thing where, if we saw a dog in an older movie, we’d say to each other: “That dog is dead now” (he had a great sense of humor). Sometimes I think about potential scenarios in my classroom where a student pisses me off because he’s said something like, “I hate this class,” so I walk right up to him and squat down, look him straight in the eyes and say, without emotion: “You’re going to die some day, Jimmy. Everybody you love will die.” And then I stand back up and go on with my lesson.

OK, we are transitioning away from death now. Transition accomplished.

I spent most of June on vacation in fabulous places with some of my favorite people. I stayed at the Biltmore in Phoenix. I went on a Mediterranean cruise and visited Greek islands as well as Croatia and Turkey. I spent time exploring Athens, Bologna, Florence, and Rome. Some of these places I’d already seen before, but their beauty merits more than just one visit.

Right before I moved to San Diego in 2006, my dad shared some wisdom with me, and it’s one of my guiding philosophies. He said, “You know, it’s the people and not the place that matter.” And it’s so true. The Arizona desert is majestic, yes. The ancient ruins of the Acropolis are mesmerizing, definitely. The Colosseum is incredible, of course. But the most significant part of those trips was the people I was with. I’ve never been lucky in love. I’ve never really known what career would bring me the greatest satisfaction. But I’ve always been so blessed by friendship. There is nothing I am more proud of or more grateful for than the friendships I have fostered and maintained. I have a wonderful family, and I am lucky to have been born into this particular one, but friendships were my choice, and I chose well.

“Humans have only one ending,” Ruth Handler said to Barbie, “ideas live forever.” Cheers to mortality! Cheers to immortality! And friendship! And good ideas!

Absolutely Insane Ways to Start the School Year

Posted on by tittumor

The first day of school will be here soon. Here are some absolutely insane ways that I could start the school year (Please note that I would never actually do these things and that all of the names/people/details mentioned are completely fictional).

-I’m lying on my desk with my eyes closed, mumbling incoherently as students walk into my room. The bell rings and I sit up, put the B-52’s “Rock Lobster” video on the smartboard and dice up a carrot that I immediately throw into the trash. The video finishes and I distribute my syllabus. I then sit down at my desk, get out my phone, dial, and for the next two minutes I just yell-progressively louder-“operator. OPERATOR. OPERATOR. OPERATOR!” I hang up, throw my phone across the room, aggressively walk over to a young lady and stare at her for about 30 seconds, then I look at the class and say, “Did you guys have a good summer?”

-The bell rings; I fart really loudly, sticking my ass out and scrunching up my face for emphasis and then yell: “That’s some real shit, motherfuckers!” Then I ask them, “What’s your definition of the American Dream? Turn to a partner and share.”

-The bell rings. “Kayden: according to Zillow, you live in the most expensive house out of everyone in this class. How does that make you feel?”

-The bell rings. “Ava: according to Infinite Campus, you are allergic to mangos. That must really fucking suck.”

-The bell rings. “Braylen: Your mom sent me a friend request on Insta. Please tell her that I don’t let my students or their parents follow me on my private account. And tell her that, with all due respect, she’s never going to become an influencer. Like, never. She has a weird face and she has nothing of substance to offer the world. Seriously, tell her that when her posts pop up on my feed, I contemplate not taking my cancer meds because I don’t want to live in a world with her in it. Thanks. But she always speaks highly of you and Jaylen and Waylen and Kaylen and I know ya’ll are good kids, so I’m happy to have you in my class. But seriously. I’ll stop taking my meds. I’ll die. But I’m happy to have you in my class.”

-The bell rings: “You guys realize that you’re all a part of a simulation, right? That you’re not actually real, right? You’re just projections of an artificial brain that was created in an underground Russian laboratory, right? Nothing around you is real. I’m not real. You’re not real. We eat second lunch.”

-The bell rings. “Raise your hand if you DON’T have an anxiety disorder.”

-The bell rings, but I’m not in the classroom. I walk in about 30 seconds later and the kids are talking quietly. “SHUT UP! SHUT. THE. FUCK. UP! IT IS TOO GOD DAMN LOUD IN HERE AND I WON’T HAVE A LOUD CLASSROOM. I WON’T STAND FOR IT.” I then distribute the syllabus and announce that we’re going to popcorn read it.

-The bell rings. “Welcome to my class, everybody! This is 11th grade American Literature. Let’s all go around and share your name and how you want to die.”

-The bell rings. “Welcome to my class, everybody! This is 11th grade American Literature. Let’s all go around and share your name and deepest insecurity.”

-The bell rings. “Welcome to my class, everybody! This is 11th grade American Literature. Let’s all go around and share your name and who you think is the lamest person in this room.”

Now here’s a true story: One time I did that Two Truths and a Lie ice-breaker activity with my juniors, and usually kids are like: I have a dog, a cat, and a parrot” or some lame shit like that, but this one time there was a kid on the Autism spectrum and he was all, “I am pretty sure I will die alone. I once tried to kill myself. My mom cheated on my dad” (or something to this effect), so that was the last time I did that activity.

–>Teacher friends, enjoy your last week of summer!

One Year Later

Posted on by tittumor

I’ve been participating in this trial at Siteman for a year now, and so far so good. The past 365 days have consisted of this cocktail:

-Verzenio (3 pills in the morning and 3 in the evening)

-the trial med (which is a selective estrogen receptor degrader, a SERD) (2 pills in the morning)

-Zoladex shot (monthly)

-Xgeva shot (monthly)

After the first two months of this regimen there was significant shrinkage of my bone and lung tumors, but since then everything has remained stable (no growth, just stasis). As long as there’s no new growth, I’m happy. Originally I had scans (CT and bone) every two months, but I now I have them every three months. The scans I had in July showed that the inflammation that had been in my lungs for a while (that may have been caused by the Verzenio) has resolved (which may have been a result of the Paxlovid I took when I had a mild case of Covid in June). I never had any breathing issues when I had the lung inflammation, so I never would have known it was there without the scans. My scans continue to show that I have a fatty liver, which I’ve had for a while (it can be caused by alcohol, diet, medicine, and genetics). Livers are janky in my family; I like to eat and drink, and I take a lot of medicine, so voila: hepatic steatosis. My scans back in the winter showed that the steatosis is now “severe,” so I need to lose weight and not drink (I’m not an alcoholic who eats fast food everyday, but my social life revolves around trying new restaurants with friends and celebrating holidays with family, and both of those activities are anchored by food and alcohol). So that, combined with my medicines and a genetic code that reads “fuck up that liver real good,” means that the busy, bilious organ dominating my inner cavity is enveloped by a nice fatty blanket which makes it difficult to see if there’s any cancerous growth within it. I’m not too worried though (and neither is my oncologist) because I show no signs of liver metastasis. However, my July scans were the first to ever mention the fatty liver being an issue (as opposed to just being in existence). The CT write-up states: “Diffuse hepatic steatosis is present, which limits sensitivity for detection of focal liver lesions.”

Because of this, the nurse practitioner asked if I wanted a referral for a nutritionist. I joked with her that I would be better served by a referral to a hypnotist because I know what I need to do to lose weight, I just don’t want to do it. Actually, I want to do it, but my desire to eat is greater than my desire to lose weight. I know that fat produces estrogen, which is the hormone that feeds my cancer, so you would think I’d be more motivated to lose weight. However, that’s not the case. I mean, if my doctor were to say, “You have to lose 50 pounds if you want to live,” I’d do it. But until then, I’m not overly serious about losing weight. I’d be healthier, happier, and better looking if I lost weight, but yet, I choose food. I’m not fat by any means, and I don’t eat fast food everyday, I just eat large quantities of food. I always finish my plate. I decided to accept the contact information for the nutritionist at the Living Well Center (which sounds like the Living WILL Center, which is not what you want your mother to hear as she walks into the consultation room…). I met with the nutritionist, and as I assumed would be the case, she didn’t share anything revolutionary with me (I was hoping she’d be able to offer a magic pill), but I did get some good resources, which is how I assumed I’d benefit from the visit. I’m eating more plants (my dog and I go out back and eat grass) and drinking much less alcohol.

I know this woman with Stage 4 breast cancer who is being so much more proactive in her fight against the disease. She’s doing the keto diet, eliminating sugar, fasting, doing heat therapy, and taking mistletoe shots. I responded to one of her Instagram posts with: “I wish I were that motivated,” and she was probably thinking, “Bitch, it’s my life! Of course I’m motivated!” You would think I would be trying all the things too, but I guess that since my scans show that everything is stable, that’s why I’m content with my situation. This woman also has children, and I think that I would be much more anxious about my cancer if I knew that I would be leaving children behind if I were to die. She has also experienced the dreaded Cocktail Shakeup (that’s what I’m calling it). Her original cancer-fighting meds stopped working and she had to switch her prescriptions. I am confident that I will become more aggressive and intense about my commitment to combatting this cancer once my current meds stop working because this will happen eventually. When I went to Sarah Penberthy’s celebration of life back in April (I knew her through the American Cancer Society’s Portraits of Hope program), I was asked by the husband of another woman with Stage 4 breast cancer, “Have you had to switch your meds yet? ___ has to switch hers every year” (I think this is her third year with the disease). I know it’s coming, but there is really no telling when that’ll be. Maybe one year? Maybe five? I don’t know. Luckily, my brain is wired to be anxious about stupid things and not big things, so I just roll with it.

I know I won’t live as long as most people, and honestly, I’m OK with that. This is not some Pollyanna bullshit or some façade I put on to make everyone think I’m OK. I won’t live as long as most people, but at least I know that. At least my friends and family know that. Most every year at my school some tragedy happens where either a student or his or her parent or sibling dies suddenly, and those deaths are extra tragic because of the element of surprise. My death will be no surprise (hopefully, but with my luck I may take my dog for a walk later today and get mauled by a bear). I don’t think I’ll die any time soon. I don’t spend my days thinking about death. I am not sad. I am just leaning into a difficult truth. Rule #1: Life is unfair. My favorite quote is: “The universe is under no obligation to make sense to you.” -Neil DeGrasse Tyson. This is very freeing. I don’t abide by any traditional religious texts. Have you seen NASA’s most recent pics of the universe? We are so insignificant. But yet we are all significant as individuals (so that means we’re all insignificant at the same time). For years I tried to connect with organized religion, but it never clicked for me. When asked what I believe, my mind immediately goes to the Grand Canyon. Have you seen this magnificent hole in the earth? It’s majestic. I am a part of the forces that made it. That’s my religion. This principle of energy (as articulated in a National Geographic article) is my religion: “Energy cannot be created or destroyed, meaning that the total amount of energy in the universe has always been and will always be constant. However, this does not mean that energy is immutable; it can change form and even transfer between objects.” This is what I am a part of. These are the forces that created me and that I will return to. These are the forces that connect us all. The Grand Canyon is my holy city. Doing good deeds is my daily/weekly ritual.

I am hosting a BOOBash (get it? it’s a play on boobs and boo) on Oct. 29 to raise money for the American Cancer Society’s Making Strides Against Breast Cancer campaign, and the funds raised will be donated in the name of Sarah Penberthy’s Making Strides team: Sarah’s Soldiers. It’s a $30 ticket, and it’s going to be a blast! (It’ll be a fun costume party, don’t worry; we’re not going to sit around and mourn). You can get details and buy your ticket here: https://www.eventbrite.com/e/boobash-tickets-393165527677.

*I wish I could find a clip of the dinner party scene during Season 11, episode 3 of Curb Your Enthusiasm where they’re talking about the wisdom of cancer patients, about how you should heed the advice of Stage 4 patients only because those in lower stages just aren’t enlightened enough (it’s hysterical). So here’s some of my Stage 4 wisdom:

Lean into and accept the truth that life is unfair. Fully embrace your brief stint on this speck of dust floating in space and have some fun and do some good.

*I found it. Watch the first two minutes: https://www.youtube.com/watch?v=u84GffHbcjw&t=143s


The Cruelest Month

Posted on by tittumor

“Pain is an inextricable thread in the fabric of life, and to tear it out is not only impossible, but destructive: attempting to tear it out unravels everything else with it. To try to avoid pain is to give too many fucks about pain.” -Mark Manson

April has been particularly cruel this year. I’ve been sick, exhausted, burnt out, and pessimistic, but I am determined to embrace May with a brighter disposition. I’m going to leave wasteland-thinking behind and focus on the positive (and focusing on the positive doesn’t mean denying or ignoring the negative). Being a well-adjusted person requires that you lean into reality, accept it, and deal with it proactively. I know I’m not a parent, so who am I to judge, but I think too many young people these days are being allowed to avoid their problems, and this is only going to exacerbate and perpetuate their struggles. Depressed and anxious kids need to be at school (not in bed), and they need to be at a school that forces them to disconnect from the source of many of their problems: phones. Constant phone usage has metastasized into a dangerous situation for young people. When smart phones became a thing, they were an in-situ problem and fairly manageable. I could control them in my classroom, but then they became invasive, and it was difficult and stressful to deal with their presence, but not all hope was lost. I still felt like I had some control over the situation, but now they are a constant threat; they are pervasive and destructive. My hope is that the right trial will put them in remission, and it’s time to find the right trial. If one trial doesn’t work, I’ll try another one. I love teaching, but I don’t want to teach in the traditional classroom in the age of smart phones. The Cell Phone Struggle is not usually an issue in an honors-level course since you’re working with kids who are (for the most part) more interested in learning. However, when you’re dealing with “regular” 16 or 17 year olds, it’s like playing whack-a-mole trying to keep them off of their phones. You can email their parents about the problem, and it may resolve for a few days, but then the problem returns. You can be an engaging teacher who creates carefully planned lessons with real-world application, but that can’t compete with TikTok. I know that, overall, my students like and respect me, but that can’t compete with SnapChat. I care deeply about education; it’s hard to picture myself working in another field, but something has to change. This summer I’m going to start working on my Gifted Education credential, and it’ll take about two years to complete. Then, I’ll be able to transition into a position where I’m no longer in the traditional classroom. However, in my final two years as a Language Arts teacher (so starting next year), I will enforce a new policy where students must put their phones into a “cell cell” (a jail cell for cell phones) when they come into my room. I know that most non-educators are asking themselves right now, “But why haven’t you been doing this all along?” Because it’s never been this bad. But the malignancy that is the smart phone has now metastasized to a dire situation. My theory for the cause of this is that, because students were at home doing online school for an extended period of time, they became feral. Even though they’re back in the building, many of them act as if they’re still in their bedroom with Zoom running and their cameras off doing god-knows-what while their teachers talk to black screens. This is soul-crushing for me. Also, when I start my “cell cell” policy, it’s going to be a constant battle. Kids will argue with me. Parents will argue with me. I don’t know how much administrative support I’ll get for this policy. At some point, there will be a kid who takes another kid’s phone (maybe accidentally, maybe not). When I talk about the cell phone problem, most of my friends and family tell me to just let it go, that it’s not good for my health to stress about it. “So what if those little assholes don’t know how to write a research paper? Fuck ’em.” I’ve tried not caring, and I can’t not care.

So it’s just been a perfect storm of stressors this year. The cancer recurrence just happened to coincide with what has been the most difficult year of teaching (and it’s not just me; a colleague of mine calls this year the Covid Hangover). Unlike my professional situation, my cancer situation is stable. After the first two months of my current medicinal cocktail, my lung tumors shrunk, but since then everything has remained stable (no shrinkage, but also no new growth, just stasis). My bone tumors have remained stable as well. Last week’s CT scan reads: “there is a stable 5 mm pulmonary nodule in the right lower lobe on series 3 image 79 groundglass nodule in the right lower lobe measuring 1.1 cm is unchanged, however there is a new peripheral 2.6 cm groundglass nodule in the left lower lobe on series 3 image 88.” That new groundglass nodule is not cancer but some sort of inflammation that may be caused by Verzenio, one of my medications. I was sick this month, so my oncologist prescribed antibiotics and had me refrain from taking the Verzenio while I took Amoxicillin. On May 20 I’ll go back for another CT scan to see if the antibiotics cleared up the inflammation in the lower left lung. Last week’s bone scan reads: “Tracer-avid osseous lesions at the left anterior 3rd rib and sacrum bilaterally are not substantially changed from the prior study, though a previously seen right proximal femur lesion has slightly decreased uptake (now only seen on the posterior view) and a previously seen left T12 lesion has resolved. Correlate sclerotic osseous lesions are seen on the same day CT. No scintigraphic correlate is seen for a left 10th rib sclerotic lesion on CT suggestive of a treated lesion, and a right superior pubic ramus sclerotic lesion on CT may be obscured by bladder activity on the current bone scintigraphy. No new osseous lesion is seen.”

My scans are now every three months instead of two. I go in once a month to meet with the oncologist and the study team, get bloodwork done and receive two shots (one to keep my bones strong and one to keep my ovaries inactive). I often feel like an old lady. I carry around a big ol’ pill pack in my purse; my hemorrhoids flair up (of all my body parts, my asshole has always been the most uncooperative with my cancer meds), I don’t have a lot of energy, my janky ankle (jankle?) always hurts when I wake up in the morning, and I look like Bea Arthur. I seriously have the same exact hair as Maude. Google her and you’ll see my current haircut. My hair growth is following the same trajectory as the last time I had chemo. I don’t mind having gray hair when it’s short and sleek, but when it looks like I have an old lady perm? Not so much. When I see my hair stylist in June, I’m going to have her dye my hair blonde again. Originally I wanted to embrace the gray because I don’t mind it, but the combination of curl and gray is not attractive. If my hair were straight, I’d keep the gray. Last time my hair grew back after chemo, it took about two years to return to its regular texture (which is straight). Therefore, my tentative plan is to dye it blonde while it’s in its afro state, and then maybe shave it off when it straightens out and let the gray hair come back in. Speaking of hair, I don’t grow as much body hair as I used to, so that is one perk of being a post-menopausal woman. My friend Julie once joked about requesting a “Clydesdale” laser hair removal treatment so that when she wore cropped pants, she wouldn’t have to worry about the exposed hair (she’s a genius, by the way), and I was, like, “yes!” but now I don’t have to worry about that, and it’s great.

I don’t dwell on death, but I assume I think about it more than most 42-year-olds. I had a bad feeling before my most recent scans. I was feeling run down and pessimistic, and so I’d have moments where I’d think things like, “Well, go ahead and eat whatever you want because you might be dying. Let’s see how these scans go, and if things are stable, then you should stop going to the local bakery everyday after school.” This month was the first time I experienced “scanxiety” before a scan. I know it’s related to the fact that a woman named Sarah, whom I knew through the American Cancer Society Portraits of Hope program, died after her breast cancer metastasized. Sarah, who is my age and also a teacher, was originally diagnosed with Stage 2 breast cancer the year before me, and her cancer metastasized the year before mine. I found out about her recurrence right before I went in for my last 6-month appointment at the five-year mark after my original diagnosis, and I cried when I told my oncologist about it. I had never worried about a recurrence until then. I was fairly confident that I would have cancer again, but I thought it would happen when I was much older. My oncologist reassured me that everyone’s cancer is different and that I was healthy, but it’s unsettling to know that as she was comforting me, my cancer had already returned and was spreading throughout my body.

A few weeks ago, I developed a cough that was very similar to the one that had led me to discover my lung metastasis, so I reached out to my oncologist to see if there were any way that I could get my scans done earlier. She wanted to rule out Covid first (I had already tested myself at home and was negative), so I scheduled a rapid test for that day. When I got to the pharmacy and sat down in the waiting area, I opened Facebook on my phone. The first post I saw was that Sarah was dead. I knew she wasn’t in the best physical shape, but she seemed fine (at least based on her social media posts). She was such a beautiful, vibrant woman. I went to her celebration of life last Saturday, and it was so evident that she was so loved by her parents, her husband, her two daughters, her sister, her students, her whole community. I guess it’s because I tend not to associate with pieces of shit, but the only people I know who die way too young are the most vibrant of people, the ones who really shine. The pieces of shit seem to thrive, like roaches.

Ugh. I can’t go into that hole! I need to focus on the positive. I really do believe that when it comes to your attitude, you have a choice. You can choose to be positive or negative, and by choosing the positive, that doesn’t mean you are in denial of the negative. If you reject reality, you are setting yourself up for a breakdown. Delusion is dangerous. I have problems in my life. You have problems in your life. Everyone has problems. I’m prone to this cycle of thought: I have problems–Everyone has problems–But my problems are worse–Maybe worse than some but not all–How can you grade someone’s problems?–Hurt is hurt–Struggle is struggle–We’re all fighting a battle–

It’s one thing to know and understand a thing and it’s another to live it. I know what I need to do to live a happier, healthier life, but I’m not doing it (and I think this is the case for most people). I know I should start my days with gratitude and intention, and I think you know that too, so maybe let’s actually do it? Tomorrow is the first day of May [commence the Justin Timberlake memes], so let’s start tomorrow, OK? With just two sentences:

Today I am grateful for…

Today I will…

Could Be Worse

Posted on by tittumor

A few weeks ago at school I found a copy of The Great Gatsby and it had some penises drawn inside the front cover, and this made me smile. You don’t see a lot of dick drawings in schools these days. The potential dick-draw-ers are now just watching Tik Tok videos or playing games on their phone. The decline of dicks drawn on desks and bathroom walls and in books correlates directly to the prevalence of smart phone usage.

There is a small yet vicious and vociferous group of parents in my school district that believes teachers are trying to make their kids gay social justice warriors who should feel bad about the fact that they’re white, but what we, the teachers, really want, is for kids to put. their. fucking. phones. away. I wish the vocal minority that spews such hatred toward our district leadership would direct their efforts towards advocating for no smartphones in schools, making classrooms phone-free spaces.

But that’s never going to happen. Phones (or should I say: small, portable computers that everyone stares at all day long) are a part of our world now. As a teacher, I can choose to teach or moderate phone-usage, but I can’t do both simultaneously (at least not well). Remember that scene in Office Space when they take the printer out to an open field and take turns smashing it to pieces with bats? I often fantasize about doing this with my students’ phones.

Earlier in the semester I had a student come up to me after I gave a lesson on MLA format and citations, and she asked me, “How do I do MLA format and citations?” and I said, “I just spent twenty minutes explaining that, and you were on your phone the entire time. Go ask your neighbor.” I could have used the old proximity trick during my lesson and stood next to her as a way of communicating, “I see you on your phone and you need to get off of it,” but she was in the very back corner of the classroom, and I needed to be at my computer to deliver the lesson. I could have called her out: “[Name], I see that you’re on your phone and you need to put it away and pay attention because you get points for having correct MLA form.” OR, I could have verbalized what I’m often thinking: “GET OFF YOUR FUCKING PHONE BEFORE I TAKE IT AND BEAT YOU TO DEATH WITH IT,” but I didn’t do any of those, opting for the “she’ll have to learn the hard way” approach.

School is really tough this year. My juniors seem extra apathetic. Everything is so heated because of the current political climate. Books, curriculum, masks. I hate politics, and now I work in the innermost ring of political hell: the public school system. Every December, when the chaos of the semester is in full swing, I think: I need a new job. This year the chaos has been debilitating at times. But I don’t really care about anything besides education and the written word (when it comes to professional matters), so here I am at year 18 as a high school English teacher. Recently I’ve been joking a lot with friends and colleagues about marrying somebody/anybody just to get his (or her) health insurance so that I can quit teaching and just do some hustling here and there to make ends meet. Teaching is just so stressful right now, and I keep thinking that, if I have a limited amount of time left on this earth, I just want to do something low-key. I would still work, but it just wouldn’t include grading the essays and managing the behavior of 100 teenagers. However, that’s just not plausible. I have to work, and considering the only things I’m passionate about are education (good pensions to be earned) and writing (no money to be made), I need to stay put. I called the Missouri Public School Retirement System the other week to see what it would cost to buy some years so that I could potentially retire early, and since it would cost $282K, I’m going to work until I croak. I’m eligible for retirement in July of 2035 when I’m 55, but I don’t know if I’ll live that long. Whenever I have these thoughts about my own mortality, it leads me to thoughts about mortality in general and the brevity of life. Nobody is guaranteed 77.8 years (the current average life span for an American).

Since I started the trial back in the beginning of August, I’ve had two sets of scans (which include a CT and a bone scan). The first set of scans, which came about 8 weeks after starting the trial medications, showed a fairly significant decrease in the size of my lung and lymph node tumors (I can’t even feel the tumor on my clavicle), and no new growth in my bones. The second set of scans, which came about 8 weeks after the first, showed no reduction in tumor size, but there was no new tumor growth, and the bones showed sclerosis (hardening), which suggests a response to treatment. I don’t know how long I’ll be a part of this trial. I assume that eventually the trial drug will get FDA approval, and as long as my combo of selective-estrogen-receptor-degrader (SERD) and CDK 4 & 6-inhibiter keep the wolves at bay, then I’ll just continue this regimen (and eventually the SERD will become FDA approved and be sent to me via Express Scripts like all of my other meds). From what I’ve read about metastatic breast cancer, you take a cocktail of meds that works for you until it doesn’t work for you and then you find a new cocktail and you take it until it too becomes ineffective and you repeat this process until the wolves become too numerous and aggressive and they devour you.

I also get two shots every month: Xgeva to keep my bones strong and Zoladex to keep my ovaries inactive.

My hair is coming back in the same manner that it did the last time I finished chemo. Right now it’s currently in the larval stages of the afro. It’s beginning to curl a bit.

One of my favorite stories is Charles Dickens’ A Christmas Carol, which I just finished rereading last night. I love the idea of being able to start over again. To start fresh. To recognize your wrongs and still be able to move forward in a positive direction. It’s one of the reasons I love teaching: it’s full of new beginnings. Every year I keep a document for each course I teach entitled “Reflections on [insert current school year] and To-Do for [insert next school year].” I’m always thinking about how to do something better (a better way to present a lesson, a different type of assessment). At times I get so bogged down by certain difficult aspects of the job, but I need to break out of my Scrooge cycle and focus on the positive. My school has been so incredibly supportive of me these past few months, from various fundraisers and recognitions to kind words from students and staff. I teach a course for highly motivated freshmen that requires them to do fairly extensive independent research, and they periodically turn in annotated bibliographies (affectionately known as A Bibs) to display their findings. The students I had last year worked together this fall to create an “A Bib” of why they love me and my course, and it’s one of my favorite things ever.

Sometimes The Negative overpowers me and I lose sight of the big picture. There is too much good to be weighed down by the bad. I’m choosing to channel my inner Tiny Tim this last full week before winter break and remind myself that (besides the frequent diahrrea) I feel fine, and I’m living my life to the fullest and making a living through a profession that develops the minds and character of the next generation of leaders (as opposed to just grinding it out for The Man) and grants me two months off in the summer. It could be worse.

God bless us, everyone.

I’ll Never Know

Posted on by tittumor

I finished chemo on July 16, and the four hits of Abraxane weren’t too terrible. The main side effects were fatigue, dry skin/bloody boogers, and hair loss. As soon as I could pull big chunks of hair out of my head, I shaved it off, but my head was never completely smooth, so I think if I hadn’t shaved it, it would have just been super thin and patchy. My brows and lashes never fell out, so I currently look like a punk rocker (or one of the Manson girls). My pubes thinned out substantially, and my leg and arm hair are still minimal. I’m still not growing armpit hair. On July 19 I had a CT and a bone scan, and these showed no new growth! Woot!

On July 26 I went in for an EKG and an echocardiogram so that a baseline of my heart function could be established before I started the clinical trial on August 2. For this trial, I am taking two pills: Abemiciclib (known commercially as Verzenio) (which is FDA approved) and the study drug (which is called LY3484356). These medicines are targeted therapies (you may remember my previous metaphor comparing targeted therapies to snipers whereas chemo is the “scorched earth” approach to attacking the cancer). Verzenio is a CDK 4 & 6 inhibitor. CDK 4 & 6 are proteins (found in both healthy and cancerous cells) that become overactive in metastatic breast cancer patients, so they promote the growth and division of cancer cells. The trial drug is a SERD (Selective Estrogen Receptor Degrader). Also, I know some people are wondering: is there a chance I’m receiving a placebo during this trial? The answer is NO. It would be an ethical violation to not treat a cancer patient. I will have scans done every 8 weeks to see how my body is responding to treatment, and if the trial meds are not stabilizing or decreasing the growth of my cancer, then my doctor will try something else. At this point, there is no set end date to the trial. The main side effects of the meds have been diarrhea (which is so much better than constipation, so I’ll take it) and fatigue.

On the first day of the trial I was at the hospital from 7 am to 5 pm so that my blood could be drawn throughout the day to see how my body was interacting with the medicine. I also had a few EKG’s throughout the day to see how my heart was reacting to the medicine. I didn’t sleep well the night before (not because I was nervous, but because I just don’t sleep that well anymore), so I was content to be in the recliner in the infusion room snoozing on and off throughout the day. I’ll go in for one more long day on August 30, but besides that, the trial commitment is pretty minimal. I’ll be going to Siteman every Monday morning for a quick blood draw, and that’s all that’s required (that and keeping a journal of the times when I take my pills). I can’t eat one hour before taking the trial drug or two hours after, so the fact that I take 7 pills in the morning on an empty stomach makes me a little nauseated.

A couple weeks ago I messaged my oncologist to ask about some troubling statistics. Based on SEER statistics as published by the American Cancer Society, the five-year survival rate for metastatic breast cancer is 28%, so I wanted to know if this statistic included people who chose not to receive treatment. The nurse messaged me back and said something to the effect of everybody’s cancer is different, and statistics like these are not really meaningful/relevant on an individual basis. When I went in for labs and tests a week before I started the trial, the coordinator had to ask me a bunch of questions, and one of them was about my mood. I told her that, overall, my mood was fine, but that sometimes I became sad when I thought about that 28% statistic, and I started to cry a bit. She asked if I’d like to speak to a social worker, and I said sure, so she said she’d arrange for one to come to my next appointment with Dr. B. However, I messaged the trial coordinator a couple days before my appointment and said that I’d prefer to not have the social worker come to the appointment because it may freak me out, and my mom would be with me and I thought it would freak her out too. I never heard back from the trial coordinator about this, but the social worker didn’t show up at the appointment. Before I left, Dr. B addressed my question about the 28% statistic (even though I didn’t bring it up) and basically just echoed what the nurse had said. I believe them about the statistics and their lack of meaning on an individual basis; I know they’re not blowing smoke up my ass. Also, those SEER stats are based on women who were diagnosed with breast cancer between 2010 and 2016. CDK 4 & 6 inhibitors (like Verzenio) weren’t even FDA approved until 2017. There is so much research being done on breast cancer, and new treatments become available quite frequently. Also, my cancer is hormone-positive and HER 2 negative, and these have a much better prognosis than the alternative. Last week I went out to dinner with a woman about my age who has metastatic breast cancer and is also a patient of Dr. B’s. She said that during one of her appointments, Dr. B was telling her that, even though she hasn’t been able to explain it with research, patients with a better attitude and outlook almost always have a better outcome with their health.

The social worker came to see me later on that day when I was by myself in the infusion room (I scored the private room that day!). She wanted to know how I was doing and let me know about the different support groups and counseling options that Siteman offers. I told her that the only thing I struggled with was how my family would be affected if I were to die. Perhaps that’s why she asked if I had filled out a Durable Power of Attorney form for health care directions. I told her I hadn’t, so she brought me one. I’m looking at the form right now, and I have to clarify what treatment I would want should I ever be in a position where I can’t make or communicate my decisions regarding my health care. The form states: “I want my doctor to try treatments that may get me back to an acceptable quality of life. By acceptable quality of life, I mean living in a way that lets me do the things that are important and necessary to me. Those things are: (I have to fill this out). Examples are: the ability to recognize family and friends/ make decisions/ communicate/ feed myself/ take care of myself.” I don’t know what to put here, and it’s morbid to think about. It makes me sad, but then I think about how it’s not a bad idea for everyone to be required to fill out this form. I don’t mean to be all doom and gloom, but what would happen if you were in a terrible car accident and were put on life support? It’s best that you have already stated your wishes for how to handle this situation as opposed to forcing your family to choose for you.

I think getting back to work will be a good distraction. This is my last full week of summer vacation. It was actually ideal for me to find out about my recurrence at the beginning of the summer because you’re always busiest immediately following a cancer diagnosis (all the doctor visits, the scans and tests, the biopsy). The fact that I could do all of this, as well as chemo, without having to worry about making sub plans or having to take FML was ideal. I sometimes wonder if I could have prevented the cancer from spreading to my lungs if that biopsy back in December would have revealed the cancer (instead it showed just a reactive lymph node: reactive to a big ol’ mass of cancer behind it!) (I don’t remember having the slight wheeze or the cough until early May). But I’ll never know. However, the timing of the recurrence discovery did work out in my favor.

I need to figure out how to tell my new and former students about my cancer. Some of them know already, but I was thinking about posting a short video on my teacher Instagram account so that the kids can see my bald head before we get back to school (I don’t wear wigs or head coverings because they’re hot and itchy), and they can hear that I sound fine/like myself. When I was first diagnosed with cancer back in 2015, I told my students about my diagnosis and upcoming treatment plans at the end of class, but after I did that I thought: I should have told them at the beginning of class so that they could have asked questions. I’m going to reach out to the head of our Guidance department to ask about how to handle telling the kids. I don’t mind answering their questions, but there’s a good chance that one of the kids will ask about my stage, and then they may freak out. However, I also think it will be good for them to see that someone with Stage 4 cancer can be out living her life and thriving.

I also think that my cancer situation will be good for behavior management. Last time I was going through cancer treatments I had this kid who was always on his phone. I don’t remember his name, but there was one time when I was addressing the class, and this kid was staring at his phone, and I yelled, “Joey (or whatever the hell his name was), you’re making my tumor grow! Get. off. your. phone.” And he got off his phone. There was another kid that year who was transferred into my class at second semester, a notorious trouble-maker, a junior in high school whose IEP required his teachers to use these color-coordinated strips of paper to communicate various warnings to him before he was removed from class. However (and I wonder if his counselor knew this would be the case), he was well-behaved in my class because he respected the fact that I was sick and realized that I didn’t need any extra stress.

Speaking of stress, have you ever heard of the haka dance? I’ve always been intrigued by this tradition (I love it). The Maori people in New Zealand use this dance for a variety of purposes: to prepare for battle, to welcome distinguished guests, to celebrate special occasions. I forget what I was watching the other day, but I saw a haka dance, and I thought: what an amazing way to relieve stress: the sense of community, the purposeful and intense movements, the expressive facial gestures, the loud chants and cries. This would be so therapeutic. I think the intensity of this dance would be so good for the soul. If you’ve never seen a haka dance, check this out: https://www.youtube.com/watch?v=oBfQ1uf_Ukw. Many years ago I thought of the idea of a “scream lounge”: a large space where you can go and scream at the top of your lungs in order to relieve stress and frustration or whatever intense emotion you are dealing with. This large space would include a separate lounge in the front of the building where you could order a drink or appetizers and wait for your turn to scream. This facility could benefit people since you can’t let out a loud guttural wail in your home without your neighbors hearing it (and hopefully you live by decent people who would call 911). You might be hesitant to scream in your car because you’re self-conscious about people in the lane next to you thinking you’re insane. Maybe the scream lounge could offer nightly haka dances?

And another update: A prosecutor called me last week with updates about the people who broke into my house two summers ago. He’s working on the case involving Andrew DeLacey Bell (who is getting 10 concurrent years in jail for burglary and robbery). The other dude, Demarcus Weekley, had already pled guilty and I don’t know what his punishment was. I asked about Sharon Stone, and even though they know she was one of the people who broke into my house, there just wasn’t enough evidence to convict her. I don’t know about the other woman who was part of the break-in squad. The prosecutor just wanted to let me know that I could come to Andrew’s court proceeding if I wanted to and that there would be no restitution offered to me. I said I was fine with that since I had gotten my crockpot back.

What I would love to know is if this break-in was a double-date (but I’ll never know).

Death and Taxes

Posted on by tittumor

My hair started to fall out this past Friday, so I had my sister shave it off on Saturday. She did it in my parents’ kitchen. My nieces and nephew were there, and it was a light-hearted occasion. I cried a little to my mom when I got over there because I was sad about having to shave my head again, but I quickly snapped out of it. The kids added an element of levity to the situation. My niece Ella said I looked like Namaari from Raya and the Dragon and my other niece Amelia said I looked like her friend Steve. My nephew Jonathon decided to make us all wear paper plates as hats. There were brownies involved.

The last time I had my head shaved due to chemo was in November 2015. Anne, my best friend since 8th grade, and her husband Brian took turns with the clippers on their back porch. I took video of this, and I watched it just a few weeks before I found out about my recurrence. In the video, Brian was healthy and happy. He died in February 2017, two months after he was diagnosed with a rare blood disorder called Primary Amyloidosis. It all happened so quickly. The day after I hosted the first Breast Dance Party Ever fundraiser (about 2 months after Brian’s diagnosis), Anne called me crying, and I couldn’t really discern what she was saying, but I understood enough to know that Brian was in the ICU, so I drove to the hospital and I tracked down his room. His parents stood and Anne sat, all looking in on Brian from outside his room. I have never seen such anguish on people’s faces.

Life is so incredibly difficult, and how people endure what they endure is nothing short of miraculous. My greatest fear is that my parents will have to watch me die. My goal is to live longer than them because I don’t think that there is anything worse than the death of one’s child. The most impressive number I’ve heard in terms of someone living with metastatic breast cancer is 20 years (that was how my surgeon tried to reassure me: “I’ve treated women who’ve been living with this disease for 20 years,” she said in an encouraging tone). 20 years puts me at 61, but there are so many advancements being made in breast cancer treatment that I don’t think it’s overly optimistic to think that I can live a long time with this disease. I am eligible for retirement at 55, but if it turns out that my prognosis starts to take a turn for the worse, I wonder if I can work out a deal with the MO Public School Retirement System so that I can do early retirement? I will NOT spend my final years reading things like “The theme of this essay is that you shouldn’t judge a book by its cover because of the character Boo Radley” (I’m pretty sure just writing that sentence expedited the metastasis in my bones).

I’m not consumed with thoughts of death, and I don’t dwell on my disease. I remain positive and optimistic most of the time, but of course I’ve googled “metastatic breast cancer survival rates” and seen the statistics. Last Tuesday I played bar trivia, and there were times throughout the night when I had to fight back tears. I think it was because that was the first time I engaged in an activity that was a regular part of my life before the MBC diagnosis, and just thinking about the contrast of what life was like before my recurrence and how it is now made me contemplate my situation. By the end of the night I was eager to leave the bar, and when we got in my boyfriend’s car I started to cry a little.

“What’s wrong, baby?”

“Oh, you know, just that I may die soon.”

I remind myself that good health is no guarantee for longevity. I think about that 12-year old girl here in St. Louis who died a few days ago after being swept away into a storm drain. And that 16-year old girl who went swimming at Castlewood State Park a few weeks ago and drowned (and all the recent drownings in the Meramec River-which flows less than a mile away from my home). I think about this beautiful young woman I went to college with who died in a car accident on her way to work when she was 24. My boyfriend’s best friend tripped off the bed of a truck and fell and hit his head and died when he was in his early 20s. The bell tolls for all of us, and a Stage 4 cancer diagnosis has not prevented me from finding joy in life, but it has made me more cognizant of the sound of the knell.

In the past few years I have had so many students who have been diagnosed as “anxious” and they have legal documents that grant them more time on tests, etc. I don’t deny that their anxiety is real, but I want to pull them aside and say, “honey, this is a fucking timed essay about a theme of a book. In the scheme of things, it doesn’t fucking matter. One day a person you love is going to die unexpectedly. You’re going to have dreams and goals that don’t come true. You’re going to learn ugly truths about the people you care about. BUT, the good part is, life is still pretty great. Even with all that.” My greatest concern about today’s youth is that they seem to lack coping skills.

So there are two guarantees in life: death and taxes. I’ve been preoccupied with both. On July 3, a woman from the St. Louis City Department of Revenue came to my parents’ house and handed my mom a court summons that was addressed to me because I hadn’t paid my 2020 personal property taxes. But the thing is, I did not live in the City of St. Louis at any point in 2020. Back in December when I received the original bill, I called the city Dept. of Revenue and I thought I had resolved the situation. However, in April (or May?) I received a delinquent notice, so I decided I would just deal with it once school was out (but on the last day of school I went to see my doctor because of what I thought were swollen lymph nodes but were actually tumors, and things got a little busy after that…). SO, after chemo last Friday, Mom and I drove to the St. Louis County Dept. of Revenue so that I could pay my personal property tax (you pay PPT to the county in which you reside on Jan. 1; I lived in St. Louis County on Jan. 1 2020 and lived there until Jan. 29 when I closed on a house in Jefferson County). I figured it was best to try and resolve this issue right after chemo since I have a lot of energy afterwards (I get a steroid drip as part of the infusion, so I basically turn into a tweaker for the next 24 hours). After waiting in line at the St. Louis County DoR, an employee said that I needed to resolve the issue with the city first. So Mom and I headed to City Hall downtown. I put my name on a waiting list and waited in one hallway, then my name was called and I waited in another hallway. Then I was called into an office and I waited there. Finally, I met with somebody and it was an easy fix to delete my account and remit my payment.

Here’s what’s up with my treatment:

During my infusion last Friday, the trial coordinator came and talked to me and had me sign some paperwork. Last Friday was originally going to be my last chemo treatment, but Dr. B is having me do another one this Friday since there’s time to fit it in before the required two-week off-period needed between chemo and the trial. The trial I will participate in will have me taking 2 or 3 oral medications that should have minimal side effects. If scans and bloodwork show that the meds are effective at combatting my cancer, I’ll continue with the trial (I can back out at any time). If the trial meds don’t seem to be benefitting me, I can try another treatment.

I went to Siteman today and got a shot of Xgeva (a bone strengthener) and then I met with Dr. B and the trial coordinator. I go in next week for a CT scan, so hopefully it will reveal some progress as a result of the chemo. The week after that I’ll go in for some other tests to establish a baseline of my health (or lack thereof) before the trial starts on August 2. There will be a few days during the trial where I will have to be at Siteman for 8 hours (so that my blood can be drawn hourly to see how my body is metabolizing the meds), but most visits will be only an hour or so long. There is no set end date for the trial.

When we left Siteman today, Mom and I went to First Watch for brunch and then we went back to the County Dept. of Revenue, and after about an hour of waiting, I was able to pay my 2020 taxes and put an end to that nonsense.

Bills, man.

For those of you who donated to my GoFundMe, thank you so much. I don’t recommend cancer for many reasons, but at the top of the list is the financial burden. My current balance at the hospital is $5830.79 (and that doesn’t include all the $50 copays for visits with a specialist), so to not have to worry about carrying around that debt is the greatest relief.

Here’s what I do recommend: be young, healthy, and rich. If you can’t, well, come join my club. We have fun.