A Variant of Uncertain Significance

“This individual is heterozygous for a variant of uncertain significance in POLE.” Results: c.4523G>A (p.Arg1508His).

“Huh?” you may ask yourself. Exactly. The results of my genetic testing show that, with the knowledge that scientists and doctors currently have, there is no genetic explanation for my breast cancer. My deviated POLE gene has been associated with colorectal cancer, so I guess that just means my colonoscopies will start earlier. There really wasn’t much that the geneticist and her child assistant (read: an assistant in her mid-20s) could tell me. Therefore, where did my cancer come from? Was it the old building I lived in for four years? I want a gypsy with a crystal ball in a dark room to provide me with the answers to these questions:

  1. What caused my cancer?
  2. What day did the tumor start growing?
  3. If I had eaten a perfect diet and exercised every day, would I still have cancer?
  4. Will I have a recurrence of breast cancer?
  5. Will I get another type of cancer?

Back to the child assistant. One of the signs that I’m getting older is that many of my healthcare providers are looking so young (and many of them are my age). For most of my life, doctors and nurses were older and sage-like; they belonged to a caste of demigods. Now they’re the people I used to party with back in the day when my friends were in med school. One of the things you do a lot of when you have cancer is sit and wait for doctors/treatment. When I was waiting for the geneticist, I decided to look her up on Facebook, and she is friends with SHADY STEPHEN! Many of you reading this have heard me speak about S.S. (some of you may know of him through the CSI Incident). He was the first person I dated when I started Match.com, and he is one of the shadiest people ever. The geneticist totally looked like someone he would hang out with. She looked younger than me, and she had a nose ring. There’s a good chance she slept with him, so there’s a good chance my geneticist and I slept with the same douchebag. That, my friends, is a St. Louis moment. When I went to have my egg retrieval, the nurse told me that we have a mutual friend on Facebook because this person had shared my blog. This was after she had injected me with a light sedative, and I said, “Oh yes, I lost my virginity to her husband when we were freshmen in college.” Again, a St. Louis moment.

But usually I’m the young one in the room. Whenever I go for chemo at Siteman Cancer Center (the preeminent cancer treatment center in St. Louis), I am the youngest person there. Seriously. I’m always asking myself, “Do people in their 20s, 30s, and 40s just not get cancer?” Most of the people I see in the chemo pods are 60+, and most of them are men. People have asked if I’ve thought about joining a support group for cancer patients who are my age, but I don’t want to because WHAT IF SOMEONE DIES? Seriously. I don’t want to join a group and then have someone I’ve become close to die. I don’t feel the need to commiserate with other cancer patients. I just complain to my mom about how tired I am.

____________________________

I love an adventure, and I’m not a big fan of routine, so having cancer has presented itself with opportunities that, in the past, I’ve sought out through travel and meeting new people. I love non-quotidian moments. I like to hear and see new things, not just beautiful things, but strange and ugly ones too. Last week I went to Kohls to buy my grandpa a birthday present, and the girl at the check-out counter was a bit “special,” and she said to me, “Oh man, every time I see a cancer patient I just feel so sad because it makes me think of my friend’s dad who got cancer a second time and he lit himself on fire.” She seriously said that. It’s so hyperbolically inappropriate that I relish in it. I mean, who says that? Last weekend I went to a bar for the first time, and I had been wearing a wig that day. I had gone to a friend’s daughter’s birthday party, and I’d thought I’d give my wig a chance. It was annoying and difficult to not constantly readjust, but it’s cute, so I kept it on when I went to the bar. Ugh. I had one cocktail and lost my patience with it. A bar is a place where you go to relax and unwind, and there was something very zen about being at my favorite bar, The Royale, and just taking off my wig and having a cocktail. Who woulda thought that one day I’d be bald at The Royale? It makes me wonder what else is in store for me. I never would have thought I’d have breast cancer at 35, so what else will I encounter in my life? Honestly, I think the unknown is exciting.

 

 

Hair

I’m going to shave my head tonight. I have two less-than-attractive bald spots and my hair is just falling out everywhere! It’s all over my bathroom and my bed and the couch and my fleece jacket. I should have been wearing a cap this whole time, but for a while there my head was sensitive and the cap slightly aggravated it. Plus, I’ve been in the mindset of, “Let it fall, baby; let it fall.” I keep hearing the lyrics to The Band song “Rag, Mama, Rag”: Fall, Baby, Fall. It’s falling out in the standard way that most men experience hair loss: aggressively on top and slowly on the sides. Actually, I hope that the sides catch up to the top because I do not want to have to shave part of my head on a regular basis. Many women joke about shaving their head and how it would be so much easier; however, I learned from my ex-husband that having to shave your head is kind of a pain in the butt. It’s still a time commitment. Early on in the trainwreck that was my on-line dating career I went on a date with a guy who had clearly JUST shaved his head before meeting me, and he had all of these inflamed, ingrown hairs on his bare noggin, and I just felt so bad for him. It looked painful. During the date I kept thinking about what he must have been thinking: “I just want to impress this girl, but I’m bald, and I shouldn’t have used that dull razor, and she’s probably looking at my ingrown hairs, and my head hurts.” But who am I kidding? He’s a man. He was probably thinking, “I’m totally gonna bang this chick tonight.” (He didn’t.)

I have always been hairy. When I was born, I was covered in a light down. It wasn’t like I had hypertrichosis; I was just fuzzy. My parents used to sing to me, “Little Fer Fer Girl” (to the tune of the Beach Boys’ “Little Surfer Girl”). I was a fuzzy kid. One day when I was 11, I wore tights to church, and I remember sitting in the pew looking down at my legs and seeing how pronounced my leg hair was smashed against the thin, nylon covering. I suddenly became very self-conscious. After church we went back to my grandparents’ house, and throughout the day, I would sneak into their bathroom and use my Grandpa’s ancient razor and rusted can of Gillette shaving cream to rid myself of leg hair one section at a time. It’s very freeing to rid yourself of body hair. And speaking of body hair…I know you’re wondering…yes, my pubes are thinning out, but not to the extent of the hair on my head. I really don’t mind losing my hair. I know for some chemo patients it can be traumatic, but I think it’s kinda funny (I look a bit like Krusty the Clown). I DO have some legitimate concerns about my eyebrows and lashes. They are still intact, but if I lose them, I am worried that they’ll return in an inferior manner. When your hair returns after chemo, it can be a different texture or color. I’m OK with this in terms of my head hair, but I have naturally well-sculpted brows and thick, long eye lashes. What if my brows come back and look like an old man’s? (all wiry and long) What if my lashes come back short and thin? Well, future self, let me tell you something: screw your brows and lashes! You’re alive and healthy. You could grow a horn, but screw it. You’re alive!

Hair is a funny thing. Since you, reader, are a mammal, I know you have had your share of hair struggles. I think men have it easier in terms of hair-related anxiety, but they’re not completely off the hook. My brother-in-law once told me a story about how on one of his spring break adventures in college, he had to shave his buddy’s back before they went out on the beach. That’s real friendship. As I’ve gotten older, women friends have become more open about their hair struggles (“Yeah, I need to get my ‘stache waxed.” or ‘Where are these chin hairs coming from?” or “My husband says he’ll take me out to eat if I just, for the love of god, go and get my muff tamed.”) Let’s keep it real in terms of hair, ya’ll. Let’s support each other as mammals.

My ex-father-in-law was funny about hair. He was a character. I had met all of my ex’s family (wonderful people) before I met my ex-FIL. One day we were at my ex-‘s mom’s/dad’s house, but the thing was, my ex-FIL had built an addition to the home so that he didn’t have to interact with his wife and other family members. My ex asked me, “Are you ready to meet him?” I could tell he was apprehensive about introducing me, but I was ready. So my ex called his dad, and I could hear the phone ring on the other side of the wall. They briefly spoke Arabic to each other (they were from Lebanon), and then my ex said, “OK, let’s go.” We went around to the side of the house, and I heard his dad unlocking the gate, and the figure that emerged was something out of a Hemingway novel. He was oxen-like. Tall, broad, bare-chested. He had thinning, curly hair on top of his head, and he was missing some teeth. His hands were like large, leather mitts, and his feet were swollen in his aged sandals. He had a warm smile, and he invited me into his lair. The backyard looked like the playhouse of an insane child. He had a shed full to the brim of random tools and gadgets, and he had covered his yard with random patches of mismatched carpet (giving the So Cal idea of outdoor living a whole new meaning–>this was in San Diego). He invited us into his home, and he entertained us in his bedroom. I think we played cards. When I used his bathroom, there was hair everywhere. At first it looked like pubes, but then I remembered the hair on his head was pube-like. He had a mason jar full of this curly, wiry hair, and I remember thinking, “Why?” When I went back into his bedroom, I noticed there were a bunch of stuffed lunch-sized paper bags in his closet, but I didn’t think much about it. A few months later, my ex-FIL was staying at our house helping us flip it. He was a carpenter and skilled with all things construction-related, and he selflessly spent many, many days helping us build our home. He stayed over a lot, and one night, he came out of the shower and approached me with a concerned look and proceeded to inspect my head. “Are you losing your hair?” He had seen a good chunk of my hair that had accumulated in the shower, and he was concerned. I reassured him that I was not going bald, but he told me that I needed to be careful with the hair that I lost because somebody could get a hold of it and put a curse on me (this also applied to teeth). I then realized the reason he was saving his hair and the contents of those paper bags in his closet. I asked my ex if this was a traditional Lebanese belief, but he said no; his dad was just crazy.

Hair is a funny thing. So are people. So is life.

Chemo: 1 Jenny: 0

Holy hell, ya’ll. That first round of chemo was no joke. Let me give you the lowdown:

Last Monday I went in for my first round of chemo, and it went well. When we left the hospital, I was really hungry, so Mom and I met my sister and her two kids at a Mexican restaurant. I devoured the chips and salsa before destroying a plate of cheese enchiladas (standard). I went home and went to bed feeling full and fine. Tuesday I felt OK, but a little tired when I left work. Wednesday I was tired, and I felt a little nauseated, so I took an anti-nausea pill (without realizing that one of the side effects is drowsiness). That was during 3rd period, and by 4th I was so ready to go home. I have 5th period off, so I went to the nurse’s office to attempt a nap, and I asked her to wake me up before the bell rang. Of course, you can’t sleep well in the nurse’s office, especially knowing that you have 49 more minutes before you have to be back on stage. Ugh. 6th and 7th periods dragged. Not only was I sleepy, but I felt frustrated and guilty since I couldn’t bring my regular level of enthusiasm to my lessons. 6th and 7th periods are with my frosh babies, and we’re reading To Kill a Mockingbird, which I love. If I hadn’t felt like I’d been run over by a truck, I would have led a much more interesting discussion on the Radleys, discussing the facts vs. fiction of this mysterious Maycomb family. I would have imitated Boo peeping in windows at night (“Boo was a creeper?!” “No, that’s a rumor!”) and we’d have “played the Boo Radley game” like Scout, Jem, and Dill. I would have starred as Boo Radley (It’s my classroom, damn it). I would have sat there calmly cutting out sections of the newspaper for my scrapbook, and then my dad (a student) would have walked by and I would have STABBED HIM IN THE LEG with scissors, and then I would have calmly gone back to cutting the paper. The kids always love this reenactment. However, the discussion was much more subdued because Teach was using all of her strength to will the clock to turn 3:05. Finally, it did.

Wednesday evening I spiraled into a nasty state of existence. My body ached. I was nauseated. I was constipated. My throat hurt. Needless to say, I didn’t go to work on Thursday, but instead laid in bed all day like a miserable, old dog. Constipation turned to diarrhea, and an overall sense of soreness gradually lent itself to heartburn. Luckily, we didn’t have school on Friday, and eventually I started to feel as if I was glued together again (as opposed to shattered), and I could join the world of the living. My youngest sister came in town this weekend, so I got to enjoy being with her on Friday evening. Unfortunately, I woke up Saturday morning with a sore throat, and this evolved into an upper respiratory infection, and I’m home again from work feeling frustrated and guilty. Chemo: 1 Jenny: 0

More negativity—> The other thing that got me feeling uneasy this weekend was reading this. damn. book. called Nordies at Noon which is about four women, ages 27-30, who have breast cancer (it’s non-fiction). Two of them experience a recurrence after their initial low-staged cancer was treated (it comes back in their bones and liver), and one of the women dies. So, yeah, that was unsettling. After learning a week and a half ago that my cancer hadn’t metastasized and that it wasn’t in my lymph nodes, I was feeling much better, but then I read that. damn. book. My grandparents called me right after I had read the part about the recurrence, and I tried to keep it together, but I just started crying. “I’m sorry,” I said through sobs, “I just read this stupid book about these young women with breast cancer and…” Ugh. They told me not to worry and that I should stop reading that book (and I did). I need to call them back and reassure them that I’m fine now. How many people with breast cancer are able to talk to their grandparents? I’m sure I’m a member of a very exclusive club. I’m lucky to have my grandparents; they’re obviously young, and I was able to have so much fun with them while I was growing up because of their youthful energy. They’re still a hoot. After I told them I was going to buy from a sperm bank, PawPaw asked, “Do you smoke one of those e-cigarettes after you order it?” Now THAT is funny.

But really, though, I am so grateful for modern medicine and technology. When I teach Romeo and Juliet, the kids are always taken aback by the fact that Juliet is 13 and is arranged to be married (and that Lady Capulet was 12 when she gave birth to Juliet). One smarty-pants kid will say, “Well, if they only lived to be 40 back then, then it makes sense,” and now my understanding of this has become more visceral than merely factual. I would be dead by 40 if it wasn’t for modern medicine and technology. My mom would have died of kidney cancer in her 40s; instead, surgeons just removed her kidney. My best friend’s polyps would have turned cancerous and killed her before 40 if it wasn’t for the magic of the ever-dreaded colonoscopy. But back to me. Modern medicine has been so good to me. At 20 I was diagnosed with Polycystic Ovarian Syndrome, which is a disease that makes cysts grow on your ovaries (due to an insulin resistance), and wreaks havoc on your hormones. The physical attributes of this disease (if untreated by birth control and Metformin–a pill for Type II diabetics) are weight gain (especially in the mid-section) and male-pattern hair growth. Let’s imagine my life if I had been born in, say, 1800. I would have been an apple-shaped, bearded, nearly-blind spinster. However, I could have capitalized on my hirsutism and joined the circus and met lots of interesting people and visited lots of interesting places. I may have married a sword-swallower, and while we would have been travelling from one city to the next enjoying our lives, my tumor would have been growing and spreading its malignant cells throughout my body until they reached my bones and I became too tired to move. My husband would have tended to me with gentle grace, stroking my lady beard, and doing everything in his power to keep me comfortable. Then, I’d die (at 40), and my freak family would celebrate my life. I can see them now: my husband leaning on his sword for support, crying yet smiling, remembering all the wonderful times with his fuzzy life partner; Elephant Man holding Tiny Man close to his chest; the armless woman trying her best to embrace the sobbing Siamese twins next to her. They would have loved me. It would have been a great (short) life.