It’s been almost six months since I was diagnosed with cancer. I had surgery that went fine, but my small cancer was a highly aggressive subtype, though thankfully no lymph node involvement. I get 12 weeks of chemo, 5 weeks of radiation, and a year of monthly infusions, after which I’ll take a bone-sucking anti-hormone pill for 5 years, maybe 10. I have a darling little blog under my name that I post publicly. I wash off the darkness and keep smiling there. I’m going to use this site to say what it’s really like.

Let’s first talk about how cancer and chemo make you feel. Chew up some aspirin with no water. You should experience an awful, bitter taste plus a dry throat and mouth. That starts about 24 hours after chemo. Hang onto it for five days. Now, walk/jog 3 miles without warming up first. That provides the muscle/bone burns and aches, plus some breathlessness. Those are side effects from neuropathy, dying red blood cells, and general malaise. Finally, get a stomach virus for 2 days. Recover from it so that you’re not actively vomiting. But you still are staggering around, dehydrated, finding food hard to keep down. Most things taste as if you had a bad nosebleed. These effects start around the third day and last 4 days. Only by two or three days before you go back to chemo do any of these go away.

NOW, toss in a combination of constipation (rabbit pellets, no matter how much fiber you eat) and explosive diarrhea. Your hands get covered with your own feces in an effort to stay clean. You wash and scrub under your nails, only to find them flaking off. Every time you shower, you gasp for breath and your heart pounds afterwards because it is exhausting (though it does feel nice to be clean, especially around the poop area). The fatigue in my case is from anemia. Not bad enough to stop treatment, but maddening nonetheless.

That’s what it’s like. Every damn week, four or five out of seven days in my case. Some people have even worse side effects. It’s different for everyone, and I’m on an easier cycle than many. I don’t have mouth sores, for example. My doctor is very proactive on treating nausea.

So, feeling like this, shit still has to get done. Don’t think anyone is going to wait on you hand and foot. You’ll cook your own meals sometimes because you’re so hungry and weak, you’re willing to try anything, no matter how weird (I’m currently eating tofu slathered in soy sauce). You might have to cook for others, and the first time you feel bile in your throat because chicken and noodles smells so awful, you don’t know what you are going to do. You can’t whine and complain–“winners” and “fighters” don’t do that. Only needy shrews cry and refuse to get the jobs done. So, you shove your dwindling hair to the side and dry heave in the sink. Back to stirring the noodles. Somebody will likely fuss that you are only walking half a mile a day for exercise, you lazy creature.

People you thought were friends will send you “love and hugs”…yet nothing of substance such as a Walgreen’s gift card for all that Ensure and hemorrhoid cream or a takeout certificate for your family (who are, of course, starving because where’s our dinner?) A few will bawl right in your face, and wow, that makes you feel just awesome. (Err, thanks for letting me know I look awful and am sick?) True friends will fill your freezer full of food for the family or simply stop by with flowers or something pretty or a fun movie. They’ll listen if you want to talk about cancer…or never pressure you to mention it if you don’t. Others will say, “We don’t know how you do it! I couldn’t deal with this!” You’d be shocked at what you can handle. You have no choice in the matter.

Your house will go to hell in a handbasket. I don’t care how anal retentive a cleaner/tidier you are. Piles of dishes, piles of mail, piles of dirty clothes–it’s all part of the package. You’ll want to clean up around your bedside so badly, since you’re usually confined there on rough days, but then you’re gasping for air the second you start tidying, so that’s right out. Dust and magazines gather into cliques.

You desperately try to keep information about treatment and tests together in a folder. Then, your treatment schedule changes, or they want you there at 7:30 am (rather than 11:30) when you have an hour’s drive. Sometimes, providers fuss amongst themselves about what treatment you are getting, and why did it change, they ask, when you see a new nurse or resident? You have no idea. Your mind is still back in the waiting room.

Also, this whole time, you are wearing earmuffs. People’s mere words are hard to understand, much less string into sentences so you can construct a coherent response. You’ll get text after text after text after text. You’ll want to throw the phone against the wall. It’s probably just that people are checking on you with good intentions, but typing one more message with numb fingers is just too humiliating to contemplate because you can’t spell. Especially since you just noticed a wad of poo on your thumb.

You are going to scream at your kids and your partner/spouse at some point. To be fair, they’re going to be bit worried and pretty sick of you, too, with all the driving to appointments and you feeling like crap and not being the household organizer/cook/cleaner/mind reader or knowing why the checkbook and stamps ran away together in a sordid affair to some place you don’t know. My chemo hit at tax time this year. That was a hot mess.

But what about work? Gosh, don’t you wish you were independently wealthy. Because most of us are going to have to keep working at least part-time during treatment, to keep insurance or an income stream. You might have a nice boss and team, who send you thoughtful cards and emails and gift certificates. You might also have a crass boss or co-workers who sniff disdainfully at you the first time you show up with a steroid face and no hair, or ask you just when this whole thing will be done and over…because, really, there is no way you can actually do your job when you are an invalid. See, that’s a catch 22. You *do* feel decent some days and can work. And if you are like me, you must work. A good boss will meet you where you are, letting you take advantage of good days and lay low on bad days. An unkind boss will just be concerned about the bottom line–offering no quarter on deadlines, your mushy brain, or even your frantic emails asking for help. There will be silence and something akin to the sword of Damocles hanging around–will you still have a job after FMLA is over? Annual reviews still occur. Because you did the best you could, but some days, that meant writhing on the bed and dictating a reply to your spouse to send. My advice is if you have a supervisor you trust, let them help you. If you don’t trust them or don’t know them well, tell them as little as possible about your condition. Everything related to FMLA goes through HR, anyway.

And….my train of thought is now derailed. I think I’ve managed to drink enough water and eat sufficient yogurt to crawl to the shower. I’m sweaty and gross. Even though Thursdays and Fridays are my nadir, I put in a 6 hour day from bed, answering emails and phone calls. And so…many…texts. I think the dog might’ve snuck in and peed somewhere. Darned if I can tell whether it’s his or mine, though.

 

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Yes, a visit from Colin Firth would be great! Good luck on arranging that, though.

So, yearly mammograms, which every woman should do at age 40 or as otherwise recommended by your doctor, are a real-life version of The Hunger Games. The statistics are everywhere. Roughly 80% of the ladies who go in for a screening come out with a clear report. Even of the 20% who go back for a diagnostic workup, which involves more, ahem, squishing, and possibly an ultrasound (painless), about 90% simply had an unclear image; nothing is wrong. Ah, but you’ve done the math. About 1.8% (which works out to be one in eight women over the course of a lifetime (and don’t hold me to statistics, which change over time) will not get happy news. They may need more tests, such as a core needle biopsy, or surgery, or radiation, or chemo, or some combination above. So yeah, you go in and don’t wish anyone’s name to be pulled out by Effie Trinkett–but you sure as heck don’t want it to be you, either.

Congratulations, I won the local district Hunger Games this year. That makes me Primrose Everdeen, I guess. (And to think all this time I thought I was Haymitch).

I had DCIS (ductal carcinoma in situ) 14 years ago. Back then, a general surgeon did the work, and you got booted to the curb without any further testing, such as a sample of your sentinel lymph nodes, genetic workups (they really didn’t exist), or even radiation. In fact, I was back at work on Monday after a Friday surgery. People are now horrified by this, but I remind them: Back then, DCIS wasn’t even “real” cancer. My GYN arranged for me to chat with an oncologist that same year–and he concurred. Watch carefully, at that time, was the recommended course of action, along with the “new” BRCA 1/2 tests (negative). Things were fine for the moment.

I am scrupulous about mammograms, given my own history and that of my family. I was just a couple weeks late (early January instead of mid-December). The screening test went fine, and I heard nothing else…until over a week later when my doctor’s office called to say I needed a diagnostic view and probably an ultrasound if recommended by the radiologist. I went in without too much worry to the rural yet seemingly competent facility near my office, where I’d been going for several years. And…I got a rude awakening.

My PCP had sent me my complete report–we talked about it and agreed that the diagnostic repeat and the ultrasound were good next steps. I am not a radiologist, but I do know a lot about my particular body parts. So, things like “architectural distortion” or “micro-calcifications” are cause for caution, not alarm, since I’d seen them before in 2004. Right away, the well-intentioned mammographer was bothered by the fact that I had (gasp) read the report. It made her uneasy. Nonetheless, I cooperated fully so we could get good images. She told me to have a seat, and she’d send the radiologist my films.

“You’re sending them to a radiologist?” I asked.

“Yes–there’s no radiologist on site, so we have to email everything and wait,” she replied.

Wait I did. And wait. And wait. She kept the door shut so I couldn’t hear her calling and asking if the films had been read every 15 minutes (but moms have excellent hearing–it develops in the final trimester, I think). She was nervous as a flea. Finally, she opened the door and said I could get the ultrasound (US). Off I go to get that done. And of course those images are sent off, and I wait. ANOTHER HOUR. I’m packing up to go because this is getting crazy. The US tech comes to tell me that I can leave now. But that’s it.

“Do we have a BIRADS score yet?” I asked. The poor young thing looked at me as if I had two heads. I shifted gears because apparently I scared the hell out of her. “Okay, so, is there anything I need to know from the radiologist? Does he or she need to speak with me?” Answer: “Well, they don’t talk to patients. You’ll have to talk to your doctor. But he did say he was 95% sure this was nothing to worry about. You may need an MRI–you and your doctor can talk about it.” Thus, after four hours, I knew spit. I thought about tossing the Mammography Quality Standards Act of 1992 at her (along with subsequent research that says real-time communication between patient and radiologist is the gold standard with a suspected abnormality), but I was worn out and backed off. It wasn’t her fault. Within 48 hours, though, my PCP’s office called me back, apologizing she’d not been quicker–influenza had them all sick and still carrying a heavy patient load. No problem–I understood.

“I’m not quite sure this radiology report is, errr, as complete as I’d like,” she said. “For the ultrasound, there were no notes other than the fact they did an ultrasound. Also, there are no facilities here to do an MRI. I think additional imaging may be valuable. Is that okay with you?” Heck yes. I’ve been in academia long enough to read between the lines to know she meant, “Uh, Dr. Snape, the general radiologist, didn’t really do a great job reading your reports. You need someone who specializes in breast care.” But like I can’t say unprofessional things about my colleagues who take three hour lunches and 10 weeks to grade papers, she couldn’t exactly slag the lack of quality at the local facility. And so I pulled out the information in my phone I’d stored for the nurse navigator at the teaching hospital/major cancer center an hour away. She was marvelous and responded in five minutes. I was astonished. She set everything up right away, though she also had to “fight” to get my records.

Cutting to the chase, I went in the next week for more mammograms, another ultrasound, a core needle biopsy (it’s not fun, but honestly, it’s not the worst, either–ask for lots of lidocaine), and a marker placement. They found something, but couldn’t be sure what until the pathology came back. I went in four days after that (pretty fast timing, considering the weekend) to get the exact diagnosis: invasive ductal carcinoma (IDC, stage 1) with ductal carcinoma in situ (DCIS, intermediate grade, already solidified). The tumor is small (around 7 x 9 mm). They will sample the sentinel lymph nodes during surgery, and that same day of diagnosis, I got a genetic test for 28 markers which should be back in about 3 weeks. (I admit, I am dreading the “radiation injections” the day before the lumpectomy, sigh, which will show the surgeon, a breast specialist, which lymph nodes to excise). I was offered the choice of waiting until after the genetics came back or not–and I chose to go ahead with a lumpectomy and radiation, knowing that a final pathology and genetic report could tweak the outcome (possibly more surgery or perhaps chemotherapy, though good chances of not). It was caught early. Chances of survival and recovery are excellent, though I’ll be monitored carefully for recurrence since this is round 2 (completely different cancers, though, and on different sides. Wacky fun).

This all leads me to the title….what do you want if you are diagnosed with cancer? This sample size of one has the following suggestions for what I wanted/want/will want:

  1. You don’t want to drive 90 minutes to the specialty breast care clinic for your mammogram. It’s gas money, time off work, arranging child care, etc. I get it. I really do. So, it is okay to go to your local facility for your annual screening. ANY screening is better than no screening. But if you have a history or symptoms or anything feels “off”: Go to the specialty clinic. Go to where a radiologist reads nothing but breast imaging. Go there right away. Turns out the radiologist who read my initial films is not a breast specialist, but a generalist. He was reading CT scans of kidney stones and bone x-rays while, pun intended, squeezing my breasts into his busy schedule. This was a small IDC (though the DCIS was quite clear)–it needed an expert. There are a number of accreditations for mammography centers, so make sure yours has at least some oversight.
  2. Don’t let anyone tell you that you cannot have a copy of your records. HIPAA laws state that you can. You may be required to pay a small fee for processing or wait up to 30 days. But they are your records. If someone balks, ask for a patient advocate or ombudsman. Get the files and keep them in a binder. Take them with you to appointments. Ask questions. This is your body and your time and money. Be courteous and not a know-it-all, but ask if you do not understand what you are being told.
  3. Take a driver if you are having a core needle biopsy. There are no drugs involved that impair judgment, but you will be tired and sore after–and a long drive home is not fun. Also, take your partner or BFF to the diagnosis appointment following the biopsy. I almost didn’t, but I’m glad I did. He took notes while I stared at the doctor trying to maintain equilibrium.
  4. If you get a cancer diagnosis and face surgery, one of the nurses told me a good general rule: Take off one day from work for every hour the surgery will take. Example: Mine will be about a 3-hour procedure. She suggested taking off three days minimum to clear the anesthesia from my system, get the plumbing working, resting, and treating the pain. You may need more time if you do lifting or lots of manual labor. Obviously, depending on your surgery, you may need to take off much more time.
  5. People are going to react in one of two general ways: Sympathetic, but running away or not wanting to talk about it (don’t hold it against them; cancer is scary) OR Sympathetic and wanting to do something (even if all you want to do is sleeeeeeeep and not entertain–and really, folks, it IS about you. If you don’t want people around, say so. If you do, don’t be shy about retiring when you get tired). Give them something to do, if they ask: a) Leave a basket of laundry to be washed, dried, and folded/hung up, then returned; b) ask for a frozen casserole; c) ask for them to pick up your car, gas it, and clean it up before returning it–and maybe swing by the bank or post office, too; d) request unscented lotions, lip balms, socks (I got some awesome ones!), a fuzzy blanket, and/or cough drops–you are going to be cold (ice packs on those sensitive areas) and parched, with a dry, dry throat; e) request a couple of beverage tumblers so you can always have a cold drink at hand 24/7–I cannot begin to describe the overwhelming thirst; f) a gift card for books or music or whatever is helpful; g) assisting with child care is amazing (even if the ‘child’ is graduating high school, so this could be a meal or a gift card for them); h) bring over some movies or books or magazines, and i) offering transportation help.

And helpful people, please please do not be hurt or upset if the patient says thank you so much, but I’m good right now. It is not a personal affront; it just means they are coping with a lot and have a foggy brain. Asking them to make decisions or answer long questions on the spot is like asking a toddler.

What have been the hardest parts thus far? You’re thinking cancer, right? WRONG. For me, it’s been who to tell, how to tell them, and dealing with work (when I drive south an hour for my job and north an hour for cancer stuff–and routinely put in 50-60 hour weeks teaching, pulling data, writing reports, holding workshops, and even resetting passwords and dealing with a lot of complaints because yes, you do have to give your students some grades, and no, I cannot give you a pile of money for serving on a committee that is going to require about 7 hours of time, total, this semester. Sorry).

John Green had it right. When you tell the people you must tell, because they are your besties or your family, you don’t cry. You bite your cheek, pinch yourself, or stomp your feet to do anything but cry. Keep it simple and straightforward. For my son, the pre-med major, I made it clinical, discussing genetics and aromatase inhibitors. For the friends, it was here’s what’s going on, here’s what I need, and it’s all going to be fine (we hope). For work, where any given day I don’t get a bathroom break until 2 PM, and hahaha, forget lunch anywhere but my desk, I told my dual supervisors and kept it on point. I filed the proper papers for time off and gave them a heads up about how we might have to discuss some work from home or on our satellite campus near the hospital during radiation. For other colleagues I chose to tell, I made it matter of fact. I asked a few to help cover job-related tasks or meetings I couldn’t attend. And after 2 weeks, I think I am done with the telling and asking and talking part of this. It’s absolutely exhausting. I can honestly say I’m ready for the surgery just to have a reason not to answer the texts, emails, calls, or whatever. (Though still not excited about the pre-op radiation shots….ouch again, I say).

In closing, let me give one final cautionary tale. Beware the well-intentioned who do things like tell you icky stories of Great-Uncle Dave’s horrific, painful lung cancer, or how seaweed oil cured Grandma’s melanoma–and you need a bottle of that stuff rather than your prescriptions, or beat their chests in misery because life is so unfair (yeah, got it). They will also sometimes burst into fulsome tears and make your illness all about them. Back away slowly. Thank them for their concern–and get out. If you must, tell them that your doctor has a solid treatment plan or how every cancer is quite different. But you don’t need this dragging you down. Really.

I hope this has been helpful or at least interesting. Do you have questions or are you wondering what resources are out there? Feel free to drop me a line–I’m not a medical doctor, but I’ve accumulated a nice collection of reliable online sites. This is Andromache, wishing you the best if you or a loved one is also going through this mess.

 

I’ve been absent a while due to a huge surge in both work, and for a short while, my writing career. The latter has sputtered and the former has blossomed, but I’m going to be more diligent about blogging. So, here is a topic that has been a source of stress for me ever since I turned 50…getting a colonoscopy.

Okay, for those who are younger, kind of like every pregnant woman who turns 35, there is this “squall” of medical “issues” that must be dealt with when you turn 50–even if you have no underlying indications of problems. (I know a lot of super-healthy 40-year old first-time moms, and a bunch of smoking, drinking ones who are 30–guess who has better birth outcomes. Seriously, stop smoking). You’ll get an EKG at every annual checkup. Another is a shingles vaccine (no big deal–shingles are pretty awful). The other is a colonoscopy. You’ve heard stories, I’m sure–nightmares driven by our cultural love/hate relationship with preventive medicine. Let me throw in the usual disclaimers–I have a Ph.D., but I’m not a medical doctor. This is my own personal experience, not medical advice. Please talk to your primary care provider about your risks and benefits for anything and everything.

I knew it was coming, and sure enough, my nurse practitioner brought it up. Here’s the gist of it: For about 48 hours, depending on the practitioner, you drink a clear liquid diet (chicken broth, Sprite, light-color Gatorade, etc.) Then you take some laxative pills, fast completely, and swill 4000 ml of this absolutely disgusting concoction that expels liquid out of your rectum (I’m sticking with the proper medical terms). Different doctors like different preps; this solution was Golytely, and it was utterly nasty, a combination that tasted like a blend of dirty sea water and bits of plastic. The “lemon flavor” did nothing to help. 4000 ml is about 1.06 gallons. Since I had an afternoon appointment, I had a “split” prep, which is actually the recommended way by the American Society of Gastroenterology for getting a clean colon. So, the evening before the procedure, I was to take 4 Dulcolax tablets and drink half the solution, 1 cup at a time over the space of an hour starting at 9 PM. Then, about 5 AM, I was to drink the rest. Now, my doctor was super picky about clean colons and said, in a helpful way, that my prep could’ve been a bit better (the nurse whispered to me later that I’d done things pretty well). I think 2 things didn’t help me: a) I could absolutely not finish that last 200 ml of solution the morning of the procedure. I was already choking it down, about to toss it up, using a straw and drinking it ice cold, which is the recommended way, and b) the second dose is best if taken no longer than 5 hours or so before the procedure. However, I was told to drink it at 5 AM over the space of an hour for a 1:30 PM procedure which then was delayed over an hour, so that meant I should’ve drank it around 8-9 AM instead because the early drinking plus the delay meant the colon had time to build up new “bits” of stuff (normal), and that’s not what they want to see. I’ll know better next time…and to ask for a different prep. There are lots of options out there; it’s really physician preference. Also, if you are a barfer like me, the Harvard School of Medicine says 4 mg of Zofran taken an hour before each dose of prep can help nausea–I did this, and it certainly helped. Ask your doctor.

I definitely recommend starting your liquid diet TWO days before the colonoscopy, which is what my PCP advised–it made things coming out an easier process. While time consuming and tiring, it was not that bad to be on liquids for two days. Use baby wipes, have diaper rash cream on hand, and (sorry), wear Depends if you lay down to rest. You’ll be glad you did, and so will your floors and mattress. Anyway, after all this, you go to a facility, get an IV (which, while a bit painful since you’re dehydrated, helps with rehydration), then you go to a room and get a scope up your rectum, into the sigmoid colon, up the descending colon, across the transverse colon, down the ascending colon, and into the cecum. That’s about 8 feet in most people. They check for masses or polyps or anything suspicious and usually take a small biopsy. Then you are done; time to rehydrate (slowly) and eat (slowly) and get your strength back. I recommend resting that day and if possible, the next day  as well. I took a good walk to expel the CO2, but I was worn out from the long three day experience of prep. Seriously, it’s okay to be good to yourself and maybe work from home the day after, especially if your procedure is in the afternoon.

Now, my story…So, for every dang surgery I’ve ever had, including the miraculous Da Vinci robotic ovary removal (almost pain free), I throw up. I’m talking no matter what anti-emetic is used (Zofran works the best for me; the Trans-Derm Scop patch was a nightmare, but it works great for most people), I throw up like the possessed Linda Blair. It’s horrible. If I’m lucky, it’s like an hour puke; if not, maybe 6 hours, and oh geez, that is the LAST thing you want if you have had surgery on your neck or abdomen. But you have to be insistent that this is the case. Here are the things people have told me in hospitals:

  • Propofol won’t cause you to throw up; seriously, that never happens. (So, um, why the whole “nothing after midnight,” to avoid aspirating liquid into the lungs, if it never causes nausea? Hmm. Check out the ASA recommendations from 2015 (Table 1) at the American Society of Anesthesiology. But of course, talk to your doctor, always).
  • The Trans-Derm Scop patch will prevent you from throwing up. (I know it works wonders for many people; dang, I wish it did for me!)
  • Why do you want Zofran before surgery? Most people don’t throw up. You can get it after if you need it. (Um, it works better if taken before nausea starts?)
  • This is a fast procedure; you won’t remember anything, and people usually don’t throw up.

And the other thing that causes me problems is Versed (midazolam). I’ve stopped taking breaths–twice, and also experienced nausea, headache, and hiccups that had me gasping (to be fair, I think the CRNA in one case saw I was anxious and gave me a 4 cc bolus–whoa! Too much!). Here’s what most medical people say:

  • You don’t want Versed? Why?
  • Most of our patients are really happy with the Versed; they don’t want to be anxious. (I don’t like anxiety, either, but I do like breathing).
  • I won’t do the procedure unless you have Versed or something similar (at which point, I changed doctors).

Let me quickly say–if I was having major surgery, I’m not stupid! I’d want the Propofol, pain meds,  and a good anesthesiologist at my side. We’d work together to come with an anti-nausea plan. They are out there, and if you find one (we did), get his/her name, and request them! The two I’ve used and requested were so happy to help, and I’ve recommended them to others. Good folks who do good work, but I’m guessing many people don’t even ask their names. And likewise, Versed has been a life saver for people who are anxious or want the amnesia it provides. Seriously, I am all about do what is best for you. No judgment here!

So, there is the root of my fears and problems: No doctor I could find would do the procedure without sedation (either Versed + Fentanyl, or Propofol, possibly with Versed first). I called about 10 places and even had an appointment and procedure scheduled (he insisted on Valium because no one could possibly stand to do this procedure without some kind of sedation; I really didn’t know what I was going to have to endure, he explained). He had my favorite anesthesiologist on the case, and I probably would’ve went through with it…except the facility was like a stockyard. I took a friend there, and the space provided was gruesome. No one was allowed to be with you during prep (I’m a hard stick on a good day and appreciate a hand to hold). The cubicles were just curtains. I saw people “stacked up” in the hallway, moaning with their sheets off because the center was so busy. Just to confirm, I did call and asked: could my spouse stay with me; what were the cubicles like; and was everyone guaranteed privacy. Answers: No one can be with you during prep, we do have curtains, and we do the best we can, given that we are a “high volume” center. Nope. I cancelled. And I kept making calls.

Having read many peer-reviewed articles about unsedated colonoscopy, I contacted the nearest medical school/teaching hospital to see if they might be doing a clinical study comparing sedated versus unsedated colonoscopy. No, but they had a doctor who did them, and would I like to book an appointment? I asked several questions–can my spouse be with me (yes, of course); what is your privacy like (we have cubicles that have walls on 3 sides and a curtain on one side, and we cover our patients at all times); yes, we see a lot of patients, but we do our best to be considerate of modesty. I booked the appointment.

And to cut to the chase–it went great! Okay, I realize I’m one of a gazillion patients, but at my pre-check in phone call, the nurse said, “You’ll just have to remind everyone, no sedation, because we probably won’t remember.” And we did. Most people looked at me like I had 3 heads, but they were polite about it. One nurse, though, said, “You can do this! You seem determined, and I know you’ll be fine.” The anesthesiologist was courteous, but he was also clear: “You have to make a decision now, before you leave the cubicle; you can’t turn back because I can’t leave a patient who is getting sedation to come to you if you change your mind midway through. That’s not safe for anyone, and I know you don’t want to abort the procedure after your prep.” I agreed–that was fair, and he signed off my chart and went to help someone else. But yeah, kinda scary to hear it.

The same nurse who’d called me was the one who took care of me in the colonoscopy suite, and she was absolutely awesome and supportive. She coached me to breathe through the turns, never left my side, and gave verbal reassurances. The doctor and his fellowship doctor told me “where we are” on the turns and such. We cheered when they reached the cecum. It helped that the doctor had done these before unsedated (he said he’d had to do one on an intelligence officer) and used a pediatric scope. That made a big difference.

Did it hurt? Yes–about 3 times, for about 10 seconds each. I would say if childbirth is an 8 and a kidney stone is a 9, this was about a 6, but brief “stabs” of pain, nothing lasting very long. These were, of course, where the turns were made. I panted my way through, and the pain passed quickly. Six minutes to get into the cecum, near the appendix, where the large intestine meets the small intestine. Eight minutes to get out as they peeked at things and took a painless biopsy. I admit, I didn’t watch the monitor going in because I was so focused on breathing and relaxing. I did on the way out, and it was quite interesting. Could I “feel” the scope? Yes, but barely, like a flutter. Could I feel the gas (CO2)? Not as much as I thought. And then…done! The “I’ve been doing this a long time” tech, who helped things “behind” muttered, “I’ve seen people with the drugs have a heckuva time…that was really amazing.” And at all times, I was well draped.

I got some ginger ale, dressed, and went right home. The check-out nurse giggled and thanked me for making her paperwork easier. The only problems I’ve had have been rehydrating and eating again (I haven’t had a Coke in 30 years–but it cured my headache and settled my stomach. Also, I inhaled a Krispy Kreme donut–hmmm, start with toast and crackers first, I think). No problems getting a good night’s rest, and the coffee this AM was marvelous.

I want to repeat–this is NOT for everyone. If you have fears or anxiety, you will probably be more at ease getting medications (both a good friend and my spouse say that’s what they want, and that’s great for them–know thyself). No judgment! However, if you have problems with nausea or recovering from anesthesia, and you can manage pain with self-hypnosis, breathing, meditating, and/or relaxation–this may be something you want to investigate. Your challenge will be finding a doctor and facility who will do it. I warn you, this (and the crappy Golytely) were the hard parts. You might have to travel (I was ready to go to Minnesota to Mayo) or make a lot of phone calls. Also, beware of bait and switch–get names of who you talk with so there are no misunderstandings later. Your PCP might be able to direct you to someone they know. Why is it so hard to find a provider that will go unsedated? I suspect it’s a twofold problem–one, this makes money if you use sedation. (Sorry, but it’s true–I won’t get an anesthesia bill). And two, probably this is a difficult procedure for many people to consider doing without meds and thus is not a “norm.” Possibly, gastro residents coming out of med school are never trained how to do this unsedated. However, my doctor also said he and his colleagues do it unsedated so they don’t miss work.

I hope this is helpful to someone who is looking for this option–drop me a line if you want more info. And maybe you could tell them you work for some intelligence service and can’t have the sedation? Just a funny thought. 🙂

 

 

I’m into an almost-three week cycle of escalating upper back pain, which reached an all-new level of agony about five days ago. I woke up around 3 AM with some of the nastiest pain I’d felt in my life, centered around two points. These roughly correlated, from what I see, with C7-T1 and down through T7. (I have a known bulging disk at C4-5, plus degeneration at C5-6-7 and T6-7-8). What set things off, I don’t know, but I’m going to chalk it up to being sedentary for a couple of weeks, prolonged driving, and sleeping in a different bed over the holidays.

Everyone wants to know…”What are you doing to help this? Did you know stretching/yoga/incense/tai chi/medication/walking/heat/ice/meditation/yak milk from Uruguay can help?”

Yes. People with back problems know chronic pain and what helps their particular pain. My pain is nociceptive, not neuropathic, a result of spondylosis (arthritic changes in the spine) and degenerative disk disease. It’s due to structural changes in my spine and muscles that result in inflammation. In 2008, I got significant relief from epidural steroid injections until I could no longer put off an anterior cervical diskectomy and fusion in 2009 for two herniated disks. It did wonders for me (C5-6-7 were fused with cadaver bone and covered with a plate), and I had no symptoms of problems again until early in 2014. A new round of doctor visits (initial with a new PCP, first ortho, second opinion ortho, and follow-up with PCP—so, about four  months of appointments) and fighting with insurance to get an MRI (after spondylitic changes showed up on x-ray). It showed the new C4-5 disk bulge, acquired cervical spinal stenosis, and degenerative disk disease in the upper thoracic spine. Luckily, my lumbar spine seems fine. I say that because most people do have lumbar troubles, and they are hard to fix.

What does the pain feel like? First of all, let me list some terms. Acute pain is the type of pain that is short-lived. For example, the pain you have after surgery or while passing a kidney stone is acute. It may last a few weeks to a few months and fade away. If it lingers for three-six months or longer, though, it could become chronic pain. I am in no way diminishing acute pain. It can be horrible; most people have either had a kidney stone or know someone who has, and many describe it as the worst pain of their lives. Labor pains can be similar. This is a good review of pain: http://www.merckmanuals.com/home/brain_spinal_cord_and_nerve_disorders/pain/types_of_pain.html and http://www.spine-health.com/conditions/chronic-pain/types-back-pain-acute-pain-chronic-pain-and-neuropathic-pain

Chronic pain is, frankly, misunderstood by many. Thankfully, fewer people today than 10 years ago consider it purely in one’s mind. It may come and go without warning. It may “flare up” and be a problem for several days or weeks, then wane, but it never leaves for good. My chronic pain on good days is around a 1-2 on a 10 point scale (the universal pain scale, which is most commonly used, calls this “Hurts a little bit”). It’s never completely gone, but I would say 60 days out of 100, it’s bearable, and I can walk, swim, write, knit, and cook without too many problems. I even jogged a bit this fall.

Of the remaining 40 days, about 20 are at a 4-5, or “Hurts little more/hurts a lot more”. Those are the days I take over-the-counter mid-day pain meds, instead of just AM and PM, and have a hard time getting things accomplished at home and work, but I do get them done. As I write, this is a 4-5 day, by the way. In fact, it’s taken me two days to complete my post, since I’ve been trying to stretch and be good to my back every half hour, attend two meetings, and deal with increasing pain.

Twenty horrible days out of a 100, or about 5 days every month, I have what some call “breakthrough” pain. This is pain that’s 6-7 or maybe an 8. I’ll tell you that for me personally, labor pain without medication was an 8; a kidney stone was a 9, and the worst pain ever, a 10, as in “I’m truly going to die” was about 12 hours post-op from a total abdominal hysterectomy. I was receiving acetaminophen and ibuprofen for pain, which was brutally insufficient. I told my family I loved them, I’d see them in the afterlife, and I was dying because no human being could survive that kind of pain, ever…except I couldn’t choke out the words. It was more an “Ughrwaghhh ahhohhhh eehs” than anything coherent. A good friend who is a nurse got the point across, and finally, I received something more appropriate for post-op pain following abdominal surgery.

On these breakthrough pain days, I sometimes have to miss work. I can’t drive. I take whatever over-the-counter and prescription medication I can, strictly according to the doctor’s instructions, but more often than not, I just have to lay flat on my back and wait for it to pass. Heat packs and hot showers help, but they are usually not sufficient to stop the pain once it starts. I worry about what people might think of me, just lying there, when there is “stuff to do be done” at the house, at my office, and for the holidays.

What does the pain feel like? Imagine someone takes a red-hot stiletto or sharp, thin knife, and then, the person slowly pushes that knife through your upper back, just above the bra strap or slightly higher. The pain explodes in a starburst pattern outward from the initial knife entry point, up to your skull, wrapping around your ribcage, and into your shoulders. The pain doesn’t stop; the knife keeps constantly stabbing you. The pain is intense enough to take your breath away. The muscles across your upper back yank themselves around in an effort to realign and help the pain, but of course, this only makes things worse. Your whole back dissolves into muscle spasms. The pain then starts extending into the lower back, which hadn’t been hurting before. No matter what you do, the pain…won’t…stop.

Now…during a flare-up, imagine this pain going on for days. You can’t sleep (and this perpetuates the vicious cycle because your body needs deep sleep to recover). You can’t use your arms because it hurts your back (for cooking, daily chores, driving, pain-distracting crafts, and so on). You can hardly communicate. It’s difficult to use the computer. You desperately want to do things, but you can’t—the pain is so intense, you can’t concentrate. You get snappish and irritable when your family can’t read your mind (yes, I know that is a totally unrealistic expectation, so take this with some gentle sarcasm). People’s feelings get hurt, and you try to explain your pain to them and apologize for being miserable and angry and depressed about feeling useless and why your house is a wreck, but you just dissolve into tears because not only can you not think straight, you can barely talk. This round, I’ve had so much pain, I’ve felt nauseated, which hasn’t happened in a while. (No, it’s not my meds causing this—it’s the pain. The nausea was there well before I even saw the doctor, and it has a very different “feel” than the nausea you have from a stomach virus).

I know pain is bad for everyone. I do not want to say men’s pain is easier than women’s. It’s not. It’s pain, and it’s horrible. However, for good or ill, in many homes (NOT all—I am simply making a generalization based on the several dozen families I know personally), the women hold the glue together, and they make the choice to try to keep on doing through pain crises. They sign the school notes, plan the day-to-day activities, and organize the chaos. They may have careers of their own, and yet they still pull a “second shift,” as Arlie Hochschild describes it, while also dealing with pain (http://sociology.berkeley.edu/professor-emeritus/arlie-r-hochschild).

If that works for your family, it’s great; I am not criticizing. All I am saying is that among my circle of friends, most women I know put their health concerns last (whether they are single or in a relationship doesn’t seem to affect this). They continue to work while sick, they shuttle their kids and their kids’ friends while hacking up a lung, and often, they have to do the stuff on their lists that needs doing, or else it won’t get done. Mind you, I’m not talking about frilly holiday decorations; I’m talking about paying bills so the lights don’t go off. They take care of their animals, their job obligations, and anything else that may come along, putting themselves and their well-being low in the priority list. I don’t know if this is an American phenomenon or not, but it seems omnipresent.

I do not want to dismiss what partners and friends do for those in a pain crisis, either. My spouse was so desperate to do something, he drove 90 miles to get my ortho records for my PCP when a fax would have sufficed. He did this, I think, because he a) wanted to help so badly and b) couldn’t bear to see me writhing in pain while we waited to go to my PCP (and he drove me another 70 miles there and back; did I mention rural health care options are challenging?) So, kudos to wonderful, helpful partners and friends—but ladies, really, it’s okay to give yourself a break. Feel guilty if you must (I did), but do take a day or two to recuperate if you can (and by that, I mean if you have sick leave. I spit on the corporations who make employees work while sick). I took two days of sick leave this week, but I kept my phone on, and I checked email from home. Thankfully, everyone is so focused on finals, I was able to rest most of the time. But I was angry I couldn’t work on holiday gifts or email my students or reorganize the bathroom, like I wanted.

Of course, the best thing to do is stop the pain before it escalates, if possible. Here is a list of things I do routinely/daily to manage pain. I want to make the point that I really have tried all the things I can:

  1. Stretching and not sitting too long. I try to get up and do basic stretches every 30 minutes. It sounds like a nutcracker is in the room.
  2. Heat packs and hot showers, a couple times a day. I always have an extra heat pack on hand, ready to go.
  3. Monthly massage. Massage therapy isn’t all pretty spas and woowoo music. My massages hurt, but then they heal, and I made sure my massage therapist and my orthopedist have seen each other’s notes.
  4. Take my medications regularly. I take 2000 mg of Tylenol, divided into two doses (AM and PM), 50 mg of Tramadol (one in the AM, and one in the PM), and 1000 mg of Naproxen divided into two doses (AM and PM). I also take calcium, a multivitamin with extra vitamin E/D/calcium, flax oil, fish oil, red rice yeast, and niacin. I keep both my PCP and my ortho up to date on all the things I take, including supplements.
  5. For this particular flare-up, I’ve also been given 5% lidocaine patches (great, but cost a lot), Robaxin (it’s okay—I’d call it “better than nothing”), a steroid dose pack (6 days of a tapering dose), and 50 mg amitriptyline (PM only, for sleep). These are just temporary measures. I am fortunate in the only side effect I have from prednisone is some insomnia, so I take it early in the day. I got Toradol and Decadron at my PCP’s office (wonderful stuff, but Toradol has the potential for kidney and gastrointestinal side effects, so its use is short-term only), which did help break the cycle for a few hours.
  6. Deep breathing and meditation a few times a week. I have a yoga program for my Wii, but many of the positions are, in fact, painful. I do some basics when I stretch.
  7. I just got a gel mat for the kitchen, and it has been helpful for times when I stand and cook.
  8. Voltaren gel: While only available with a prescription in the US, you can buy this on the shelf in Canada for about $8 a tube. I’ve found it’s good at bedtime, especially for aching joints.

Here are things I’ve tried that either did not help or did more harm than good (and remember, I am just a sample size of one):

  1. Ice: I know it helps some people, and that’s great. Heat/warmth is the better option for me.
  2. Neurontin (Gabapentin) and its cousin, Lyrica (Pregabalin): These are anti-seizure medications, used for treating nerve pain, post-shingles pain, and diabetic neuropathy. For some people, they work miracles, and I am glad we have them. I tried Lyrica in 2008 for a month; I was dizzy and gained some weight, but it did nothing for pain. I took Neurontin (300 mg, twice a day) for six days this past November, and I was a crazy person. I had hallucinations, I thought worms were crawling out my nose and ears, and I could hardly stand up. I cried, I laughed, and by day 6, we were all scared to death of how I was behaving. Our pharmacist helped me cut back the dose and stop it over a 48 hour period. Some researchers at the University of British Columbia published this article several years ago (http://www.ti.ubc.ca/letter75). Use of Neurontin and Lyrica for nociceptive pain (like my spondylosis) is still not well understood, I think. While I noticed slightly less pain on the Neurontin (possibly 20% less), I noticed a marked increase in pain when I stopped taking it. That was, in fact, about the time the current pain cycle started, but I can’t prove causation—there are too many variables, like holiday travel.
  3. Curcumin: I was so hoping this would help. I tried it for two months, and I noticed no changes at all. Again, it does seem to work for some people, and I have had good luck with supplements like fish oil and slo-niacin (e.g., I am open to trying supplements).
  4. Glucosamine chondroitin: Ditto, same as the curcumin. I tried it for almost six months and noticed no difference.
  5. Chiropractic: I used a chiropractor for hip pain after pregnancy, and I do believe it helped realign things. However, two years-worth of treatments (and a lot of out of pocket money) did not improve my upper back pain with lasting effect. My orthopedist actually said it was counter-indicated for cervical problems like mine, though he routinely suggests it to his patients for whom it might be appropriate.

I have two treatments that I use (or have used) which sometimes help and sometimes hurt or have no effect. These are:

  1. A TENS Unit: A TENS (transcutaneous electrical nerve stimulation) unit sends mild currents through electrodes that supposedly erode the transmission of pain from the nerves. It sort of redirects and rechannels the pain, or otherwise “tricks” the nerves into “distraction.” On certain days, it has been helpful. For this current flare-up, it made the pain worse, so I stopped using it after one 10-minute session.
  2. Epidural steroid injections: I’ve had three, total, over a 1.5 year period. It’s been almost five years since my last one. The first two helped tremendously. The last one didn’t really do anything.

Are any readers wondering why drugs like Vicodin or something similar are not listed here? Major law changes in 2014 restricted how opioid drugs are prescribed. Moreover, the DEA has dealt harshly with doctors who prescribe these medications and pharmacies that fill them. Rightly or wrongly, they created a lot of fear among doctors, pharmacists, and patients, even those who were judicious and used them for appropriate reasons.

I guess I don’t need to say that I am filled with loathing for people who abuse these drugs (both those who steal and sell them, as well as those who improperly prescribe them), and the media that makes them more frightening than they need to be (i.e. the “don’t ever take these because you’ll absolutely become an addict!” sort of panic). I do not want my pharmacist or physician being targeted in any way, but I can’t help but wonder if I’d gotten something in this class of drugs for a short period (twice a day for a couple of days), would I be feeling better now? As an informed consumer, I simply don’t know what to think. I found opioid pain relievers worked very well after my back surgery, and I only took them for about two weeks as my doctor instructed (i.e. one tablet every 4-6 hours for the first five days; then, cut that dose by half; then, lengthen the time between doses; and finally, at the end of the second week, take half a dose at bedtime if needed). I had no addiction or withdrawal symptoms, following those instrctons. TIME has this to say: http://time.com/3445728/painkillers-opioids-dangerous/ while Johns Hopkins says this: http://www.hopkinsarthritis.org/patient-corner/disease-management/benefits-and-risks-of-opioids-for-chronic-pain-management/, which is more pros/cons than scare tactics.

This leads me to things I’m either trying or want to try:

  1. More green tea. I drink a cup full daily at the present time and enjoy it.
  2. I’m looking into acupuncture, but I want to make sure I have a qualified practitioner—and we live in an isolated, rural area where I only found a couple of names within a 60-mile drive. I don’t want to end up in Smith’s Acupuncture, Fresh Vegetable, and Coffee Shop, if you see what I mean.
  3. Gin-soaked golden raisins. I know, isn’t that crazy?! But people swear by it. If you are in enough pain, you’ll try nearly anything. The People’s Pharmacy has a good article about this here: http://www.peoplespharmacy.com/2013/10/17/gin-soaked-raisins-for-fibromyalgiareally/

I normally write about 1000 words an hour, and I’ve been working on this off and on for about two days. It’s been hard to focus. As I close the first draft, I’m glad the day is almost done, and I’m going to see my massage therapist, hoping she can help (well, not as much as I’d hoped, turns out).

Does the internet hive mind have any further, reasonable suggestions, backed by studies and data and/or reliable sources? Andromache wants to know. But now, she’s going to do some more stretching.

Asperger’s Syndrome: It’s Not “Cool”—It Just “Is”.

Asperger’s Syndrome: It’s Not “Cool”—It Just “Is”

Watch network TV for 30 minutes in fall 2014, and chances are, you’ll see a show with an “Aspie” character. Some writers actually have their characters formally diagnosed with Asperger’s Syndrome (AS), but more often than not, they’re content with just having the person show “tendencies” of the disorder. People put all kinds of spins on AS—from using it to “celebrate not being neurotypical,” like that’s some sort of shiny toy, to excusing rude behaviors. Unacceptable! Among the best articles detailing this entertainment phenomenon is one that appeared here in the New York Times online: http://nymag.com/news/features/autism-spectrum-2012-11/

First of all, you don’t know if you have Asperger’s Syndrome unless a trained medical professional, such as a psychiatrist, has made a formal diagnosis. Anybody can be an asshole or have weird habits. Just because you are an introvert doesn’t mean you have AS. Second, AS is now lumped in with a range of conditions across Autism Spectrum Disorder [299.00(F84)] in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Some people may have a formal diagnosis in the Autism Spectrum Disorder (ASD) and little outward sign of it. For others, ASD affects every moment of their life to the point they will need daily assistance with a range of activities, including eating and speaking.

We have a teenager who has a formal diagnosis of Asperger’s. Yes, it came from a bona fide medical doctor who did a residency in pediatrics and psychiatry. There’s a comorbidity (fancy talk for an accompanying condition) of attention deficit hyper-active disorder as well. Our teen takes medication to help focus on schoolwork and other activities. Having had the diagnosis and quality treatment for seven years, which includes cognitive behavior tools in addition to medication, has made a huge difference in our family life. The teen, given that many of them are secretive, surly creatures, is fun most of the time (not all the time). He loves travel and can navigate his way around a big city as well as a rural back road. Yes, he’s quite smart and is working ahead of his peers in a couple of subjects. He’s also tender-hearted when it comes to animals and his family, even if he doesn’t always know how to show it.

Case in point: I dutifully got a flu shot and had known, typical side effects—mild fever, bone aches, and a raging headache. He wasn’t sure what to do to help, so when I asked him to find out about how long the side effects might last, he visited the CDC website and made the following pronouncement: “You’re having a robust immune reaction. Your T-cells and B-cells and natural killer cells are helping produce antibodies, and that’s why you have a fever. You do not have Guillain-Barre syndrome, in my opinion.” I think he said something else about a sort of mystical cell that was related to the Enigma machine, but it got lost in my delirium (Natural killer cells? Isn’t that a Woody Harrelson movie?) Fifteen minutes later, he presented me with a bowl of ramen noodles (something I secretly love but avoid due to the calories and sodium) and gave me a hug. Now, that’s some serious affection from this kid.

Yet for every sweet moment like this, there’s a pile of awkwardness. Forget team sports—although he’s quite competitive at board games. Out in the community, sometimes people talk about him right where I can hear them (so can he), especially people who are older and who have “traditional” views on parenting. “I can’t talk to [that kid]. He’s odd.” Or they keep prodding him to interact with them by asking rapid-fire questions, shaking their heads or interrupting when he doesn’t respond quickly enough. He’s honestly trying, and if he gets something out, it’s usually polite. But to fill the awkward silence, the people often answer their own questions. The teenager is utterly perplexed. (To be fair, I find small talk tedious myself).

Dating issues haven’t gone so well, either. After writing an email to ask her mom’s consent, he finally got the gumption to call a girl he met at camp and liked. He suggested they use their iPads and Face Time—except that she forgot to ask her dad’s permission to use his iPad. Dad comes onto the scene and yells at his daughter, who hangs up in embarrassment. My teen is left confused and hasn’t mentioned trying to call her back. We reassure him he’d done nothing wrong, and that perhaps he could email her, but he’s now gun-shy. Thanks, Super-Strict Dad—I know you are nervous about your daughter talking to a boy, but let me assure you, my son has no bad intentions with a damn phone call from 40 miles away.

One late Friday night, after watching the show Scorpion, which tries to make being super smart yet socially awkward seem like a hoot with perks (it’s totally not), he asked me, “Why am I different?” I took it literally and responded with the usual platitudes of we don’t know, we don’t have an explanation for what causes ASD, but it’s probably some unknown combination of genetic pre-disposition and environmental factors, blah blah blah.

“No,” he said. “Why do I see and feel the world differently? Why do I think in multiple dimensions at the same time? Why can’t I turn off the rational part of my brain and just accept the abstract?” Whoa. That was heavy for 11:30 PM, after I’d had a full week at the office. Why was his dad in bed already when this metaphysical discussion arose?

“I still don’t know the answer,” I replied slowly, “because although I’m a visual thinker like you, it’s not hard for me think abstractly. Part of it is age, education, and experience.” I paused. “But the bottom line is that I think you can use that type of thinking to your advantage, if you work hard at it, and do extraordinary things. It’s not going to be easy because the people who run the country, the corporations, and the education system don’t think like you. They’re going to put up barriers, like the stupid, badly written standardized tests you have to take at school. But hang in there. College is coming, and there, your ways of thinking will eventually be a boon.” That seemed satisfactory to him, particularly since he’s decided to emulate the Flash/Barry Allen as a role model. (We told him that Sheldon Cooper, Magneto, and Gollum were absolutely off the table).

Take this blog post for what it is: one family’s experience with having a teen on the autism spectrum. We strongly believe that Asperger’s Syndrome does not need to be the new “in” thing. So, let’s not make it the characteristic by which we largely identify people’s “hipness factor.” Would you tell someone, “Oh, you have epilepsy! That’s really awesome! I’ve always wanted a friend with epilepsy.” Or, “You’re bisexual—that’s so cool! I wonder if I’m bisexual, too? It seems like the ‘in’ thing to be right now.” Crap like that would make a lot of people beat you up, deservedly.

The bottom line: Asperger’s Syndrome isn’t “cool” or “trendy”…but neither is it “uncool” or somehow “wrong” to have it. It’s just a state of being. Don’t single out people with AS, either positively or negatively. Don’t try to tell parents of these kids how to “fix” them. Just let it be—and let them be. It’s all good…67.831% of the time.

My class reunion is coming up this weekend. I went to the last one–it was okay. Not much had changed about how people acted or treated one another. I stay in touch with the people I like and not the ones I don’t, so there was no real need to go to this next one. Besides, my buddies weren’t going, and I sure could use a free weekend to write. Or do laundry.

The other day, my spousal partner heard me talking to our teenager about how much I had loved chemistry in high school. (The teenager is a complete math/science nerd and extremely proud of it, though getting him to write is worse than pulling molars). We had a good teacher–she was funny and she knew how to teach, a winning combo. I especially enjoyed the study of atoms–how they were made and stuff of that ilk (I’m sure there’s a name for that sort of thing, but I don’t recall it). My spouse asked me why I’d never taken more science in college, aside from the required 2-course sequence (biology) if I loved chemistry so much. “Because of my high school trig teacher,” I promptly answered. “She taught me a bad lesson–that I couldn’t do math.” Now you see how this links to the high school reunion. I’ve been seeing pictures on various social media making quips about that math class and its “quirky” teacher. They’re not a bit funny to me. Having that teacher was, in fact, more than a bit traumatic.

See, here’s the deal. I was good at math and science. Maybe I wasn’t destined for a career in chemistry, nor was I any kind of math genius, but with the right person guiding me, I not only was decent at math and science, I was quite good at geometry. And I did fine in biology, though I liked chemistry much better. The spouse said, “I see a lot of stories about ‘the teacher that most influenced me’ in a positive light. Why not write about a negative experience?” So here it is.

I had a particularly superb 8th grade math teacher (I took algebra a year early) as well as an inspiring 8th grade science teacher (earth science–weather and oceanography–it was wonderful). I remember her setting a glass of cold water down in front of our lab group. Condensation formed on the exterior of the container. “Tell me what is happening and why,” she said. “Explain to me what’s going on when the water forms on the outside of the glass.” We came up with some wild theories, but eventually figured it out by working through the problem in front of us. Damn, talk about a teachable moment! And it was low cost! I ran into her about 15 years later at a conference and was delighted to see she’d gone on to teach college science education to future teachers, after a long career in the middle school classroom. My algebra teacher began on the first day of class with the books open on the desks. She could be fun, but she stressed to us from Day 1 how serious we had to be about our studies. I got pneumonia in 8th grade and had to stay home five days of school. When the doctor looked at my chest x-rays and delivered the bad news, I panicked. “I can’t miss algebra!” I cried. “Please, can I just go to school for that one period?” He looked at my mom and said, “No patient of mine has ever complained about getting to miss school.” I think he thought I was nuts–or very odd. I got As for all but one 6-week grading period that year.

So, in high school, as a freshman, I was in Algebra II and Biology, both of which were sophomore classes. I wasn’t the #1 student, but I was still a strong performer. I enjoyed the classes a lot. Even dissection, which I found pretty gross, was bearable. I knew absolutely and utterly that I would never have a career in any kind of medical setting–ever. I took a second year of biology–challenging but interesting–and followed up that second algebra with geometry, which I adored. I was considering a career in law, with a major in classics or English, so doing proofs was kind of a breeze.

As a junior, I went into the next math course–college algebra (aka algebra III) and trig, a two-semester combined course. And things fell apart. No matter how much homework I did or how many hours I spent studying, I rarely got scores above a C. And I really tried. I got help from friends. I spent hours trying to understand the stuff. But when the teacher’s idea of “teaching” was showing one problem, saying “you don’t have to understand anything but the formula,” and getting students to do problems on the board (sometimes incorrectly) without any follow-up explanation…well, that was an issue. Remember that this was long before things like Khan Academy or YouTube; even the Internet was quite young. My parents, who had no idea what to do, called the district office to see if any kind of tutoring was available–nope. I squeaked by with a C in college algebra, but when it got to trig, I couldn’t even get a D. So, I just completely gave up. I spent that last 15 or so weeks of school writing scripts for a TV show my bestie and I had created. The teacher never noticed since I was quiet and didn’t move the chair out of its tile squares; she had a real fixation about that. My writing skills developed nicely. Meanwhile, I was doing fine in all my other subjects, and I’d discovered a passion for history, thanks to a teacher every bit as gifted as the math teacher was terrible. It was probably the only thing that kept me from falling into a serious depression. For the first time in my life, I had genuinely failed at something. My demanding mother, who never interfered in school because teachers were always right, saw how hard I’d worked and didn’t skin me alive for bringing home a report card with the letters A, A, B+, A, A, F.  (The B+ was in chemistry, back in the days when an A had to be a 94 or higher). Something look weird about those letters to you? Yeah, me, too. If I had a student with those grades, I’d talk to them and find out what was going on. Only one teacher of mine did. All students had the same homeroom teacher, all four years of high school. Near the last day of school that year, she took me aside. Mind you, she hadn’t ever had me for a class, and other than seeing her for 15 minutes a day, she barely knew me…or so I thought.

“I just wanted to tell you….” I remember her awkward pause. “I wanted to tell you that the same thing that happened to you in math this year happened to my daughter, too.” I recalled that her daughter had graduated a year earlier, a popular honor student. “And…please don’t worry. She got into the first university of her choice. She’s doing great there, and she’s not having any trouble with math on the college level.” That was all she said, and probably all she felt she could say without speaking ill of a colleague. I wish I’d thanked her more for saying what she did. It meant a lot. Flunking that math class seemed to cost me a lot in the short term–not graduating in the top 10 of my class, not taking any more math or science (despite wanting to be in advanced chemistry), possibly missing out on some scholarship money, and definitely destroying my confidence in my math/science abilities. I never considered any kind of career in science after that point…because I’d been given the clear message that I would fail.

I exempted all but one math class for my undergraduate degree; I took logic for that one required math and got a B, which was fine since it was actually sort of boring. I took one statistics course in grad school and got an A. I became a successful social sciences faculty member with a Ph.D., a tenured associate professor (for the moment). I thought I’d never have to worry about math again aside from averaging grades. But then, we had this aberrant child who was some kind of math/science whiz. When he was in 5th grade, I saw that unless I refreshed my math skills, I wouldn’t be able to help him before too much time passed.

We are lucky enough to be able to take one or two classes as employees of our university system, free, each semester. I’d been out of high school a long time; heck, I’d been out of college a long time, other than as the instructor. I knew I was both wiser and able to tell whether or not a teacher knew how to teach. I took a chance and enrolled in college algebra. Parts of it were challenging (logarithms, shudder), but I got an A. In fact, to everyone’s utter shock, I found out I sort of liked math, for many of the same reasons I took and liked foreign languages. I got a thrill out of the deciphering and problem solving. I enjoyed it enough to enroll next in pre-calculus, and there was another shock: I loved trig. LOVED it. The whole earth opened up, and angels sang as my mind started seeing unit circles in everything from the window panes to the ceiling of the Sistine Chapel. It blew me away. But let me quickly give credit to the professor, who used videos, practice tests, homework with a program that walked students step-by-step through how to work problems, and other techniques aside from throwing a random question on the board and expecting students to do math through magical osmosis. He answered any questions, promptly and thoroughly, no matter how “stupid” they may have seemed. I recommend him all the time, and most students have agreed with my assessment of his teaching skills. The ones that don’t are usually those who don’t bother to take advantage of all the practice and extra credit he offers (probably the same ones who botch my classes, too).

Thus–an example of how a teacher influenced me. No, let’s be honest–that’s a story of how a teacher royally screwed me over. She was a crappy, awful teacher who had no idea how to convey her subject. She may not have intentionally set out to mess with my mind and confidence, but she did, and she never displayed any empathy or compassion to her students. Let’s just say that I was fortunate enough to a) have other teachers that were a positive influence on me (the ones I’ve already named, plus my Latin teacher), and b) possess the metacognition to know how to master a subject I once thought I was absolutely incapable of understanding.

What’s next for me? Well, if I get the time, there’s calculus. And heck, maybe I’ll even give chemistry a try. I’m too old to change careers, but I’m living proof that you are never too old to learn…and master…something new.

Now, back to that novel I’m writing….