Update to -1

Ethan’s teacher responded to my email. She was “surprised” that I sent an email and “sad” that I thought she “would be such an inconsiderate teacher.” After a couple of email exchanges, I have a bit of clarification, but not satisfaction.

Students were told to ask “any adult” to tell the story of where they were when the Challenger exploded. Some parents, as the teacher pointed out, were only a year old at the time, so it could be any adult. (A year old in 1986!? Now I feel ancient…) She said she specifically told Ethan he could ask his grandma for a story. Students received one point for each “story” they brought in.

Fine. However, “story” seems to be a pretty broad term. Literally, most students had one line – “my dad was home sick.” That’s not a story. That’s a statement. I wrote a story. A one-page story. The only story.

Also, while the kids see my mom regularly and B is becoming a more regular fixture during the week (YAY!), there’s one “adult” with whom the kids have regular contact. Me. It’s presumptuous to assume there’s anyone else around the kids on any given day. There is simply me. That’s only one extra credit point because there was only one adult around the dinner table with whom Ethan could get a “story.”

On the night of the assignment, I picked E up from school, and he was with my mom for about 40 minutes while I went to the gym. In that 40 minutes, at minimum, she emptied the kids’ lunchboxes, made snacks, ensured Lauren had all her winter snow gear for the next day, went through Lauren’s school folder, listened to Lauren read a story, helped Lauren with homework, and took the dog out to potty. She probably also moderated arguments between E and L, coerced them to change out of school clothes, tracked down Lauren’s water bottle (she always leaves it in my mom’s car), and who knows what else. Point being, there wasn’t  a lot of time for my mom to chat with Ethan about her recollection of that historical day.

Sometimes adulting is hard. Sometimes it sucks. Today is one of those days.

 

And you get -1 for not having a second parent

I’m pissed. I’m sad. I’m literally crying in a Panera Bread right now. (Since it’s too early for a drink, I’m medicating through pastries and massive amounts of caffeine.)

The kids attend a Catholic school, which means there’s an expectation for parental volunteering. I could write PAGES on how I feel about volunteering and how it’s (mis)handled at the school and why it’s best for everyone that I do the minimum (lest I be seen as a raging, controlling, know-it-all bitch), but that’s not today’s point. At the beginning of the year, I signed up to help with “Friday folders” in Ethan’s class. Basically, once a week, all the tests and homework and notes to parents have to be sorted and put into the correct kids’ folder to go home. It’s usually less than an hour every three or four weeks. I can do it alone, first thing in the morning when I drop off the kids, and still have the rest of my day for grading, yoga and errands.

Generally, I don’t pay much attention to anything I’m sorting. Look at the name, put in the kid’s pile, move on to the next. But there was one assignment in which I was interested.

The kids were asked last week to talk to their parents about where they were when the Challenger exploded in 1986. The kids had to write (or have a parent write) the response for extra credit. I told the kids the story of where I was and how I learned of the explosion. It was long and convoluted (junior high, screaming crying science teacher, seeing it on TV in the classroom after lunch, watching endless coverage that afternoon/night, sister’s birthday celebration that night downgraded and somber, Chicago Bears Super Bowl decorations still out around my grandma’s house where my sister and I were staying while my mom was in the hospital and dad was out of town). See, lots of detail. I remember it well. So I wrote the response. It was an entire page.

Ethan added a second part of the extra credit – how many Earths would fit into the sun? (1.3 million, if you were curious.) And he turned it in.

Today those responses were part of the work to be sent home. Most were short – “my mom was in high school” – few went into much detail – “my dad watched it in the library at UWM.” Mine was by far the most detailed and longest. (And it was the only one written in green Sharpie. Green for science, get it? Color coding!)  Ethan received two points extra credit (one for my response, one for the Earth/sun question). Great.

But several kids in the class received THREE points on the extra credit assignment. One point for the Earth/sun question, one point for mom’s response, one point for dad’s response. The teacher made three check marks on the papers that received three points – one check next to the Earth/sun question, one next to the mom’s response, one next to the dad’s response. Three points.

Two-parent families, in which both parents contributed to the “where were you” assignment, were rewarded more than those in which only one parent responded. (And, quite frankly, the generic nature of the majority of responses – “My mom saw it on TV. My dad saw it on TV.” – make me question how meaningful some of the conversations really were, and, honestly, if some of the conversations actually even took place.)

Spoiler alert: in our household, there is only ONE parent capable of responding since the other is, you know, dead.

It feels woefully unfair. It’s exactly what I don’t want Ethan – or Lauren – to experience: “your dad is dead and you’ll never be on the same playing field as kids with two, living parents. Those kids will always get three points, and you’ll be stuck with two points. You can’t ever get three points.

Exaggeration? Yeah, sure.

It’s just extra credit, you’re thinking. Big deal, right?

Wrong. This is a kid who continues to struggle with his memories of his dad. A kid who is still coming to terms with his grief. A kid who is ANGRY that his dad chose to drink beer and vodka and whiskey instead of choosing to LIVE to see his kids grow up. A kid who is very aware that he is different because his dad is dead. Dead. Dead.

Yeah, to THAT kid (and his mom), losing out on one point is a much, much bigger deal. It’s symbolic of what’s lost and can never be replaced.

It’s another more hurdle to overcome. One more time in which he won’t have something others will, through no fault of his own.

He will always be one point shy of his classmates’ scores.

Fuck.

Updated: I sent the teacher the following email (yes, regardless of what I say in the first paragraph, I’ve already jumped to conclusions, but I needed to write/post this blog or I would explode with rage). I’m eagerly awaiting her response:

Hi (TEACHER NAME) –

While doing folders this morning, I saw something that really disturbed me. I wanted to ask about it before I make any assumptions.

On the “where was my parent when the Challenger exploded” and Earth/sun extra credit, some students received 3 points, while others (like Ethan) only got 2 points. The only difference between those who received 3 points and those who received 2 points was the inclusion of information from both parents (Earth/sun=1 point, mom=1 point, dad=1 point).

Please clarify the point system, and if Ethan did not get a third point because asking his dad is impossible. Thank you.

–J

 

Fatigue, Brows, Oxygen, Kiddos – Updates

I’m tired. Really, really tired. I need – nope, I require – a nap every day, and bedtime is definitely before 10 p.m. (usually closer to 9, really). The oncologist says this is because of the cumulative effects of the chemo. Including this week, only five more rounds (11 rounds DONE!). Thank goodness. Fridays at the cancer center are starting to wear me out.

I met with the surgeon on Monday. I still have the choice of lumpectomy or mastectomy, and I’m thankful to have options since many women don’t. As I expected, there are more doctors to see (radiology oncologist tomorrow and plastic surgeon TBD) and more test to schedule (mammogram and ultrasound) before surgery. I reiterated my desire to have surgery done and recovery complete before next semester (Labor Day). Right now, that looks do-able.

Other updates:

– Classes are done, and I’ve never been happier to get to the end of the semester. I’m almost done with grading, and since I’m teaching the same three classes in the fall, prep time for fall will be minimal. I’m looking forward to resting and just taking it easy. (And naps whenever I want – yay!)

– Drawing eyebrows is hard. My eyebrows and eyelashes are nonexistent these days, and without any hair on my head, I look… like a cancer patient. I’ve tried eyebrow gels and pencils and powders and crèmes… I’ve tried freehanding the brows and using a variety of stencils. I usually get one dark brow, one lighter, one with a nice arch, one flat across, one super wide, one a little too narrow. Basically, if you see me IRL, please only look at my right brow – it’s the better one most days. And forget lashes – I’ve glued my eyelids together more than once with my “eyelash wigs” (Lauren’s term for false lashes).

– My oxygen levels are still not always where they need to be. I continue monitoring myself with a pulse ox meter I bought at Walgreens. Walking from my car to the office causes my levels to get in the low 90s/high 80s. And even though the levels climb to the high 90s pretty quickly, I find myself short of breath with a really rapid heart rate for a while. After talking to the doc, I think some of this is related to not having much stamina – it’s been about two months since before the fever and the pneumonia and even feeling blah before that. So almost two months since I’ve done much. I’ve started walking on the days when I can (Fridays, Saturdays, Wednesdays, Thursdays – the other days, I’m zapped). It’s slow going, but Ethan usually walks with me and cheers me on. I’ll get the stamina back – it’ll just take time. And I really hope that’s the answer to getting oxygen levels more stable, more often.

– I’ve coined a new phrase – “free balding” – which amuses me to no end. “Free balding” means going out in public without a turban or scarf or wig or anything on my bald head – basically, it’s going cranially commando. Used in a sentence: “It’s crazy hot so I’m going to free bald it to the grocery store.”

– Ethan has REALLY stepped up in the last few weeks. Reports from his teachers and the principal are that he’s really maturing this year, and his behavior is much better than at the beginning of the year. He’s been just amazing through this whole cancer thing. He looks out for me – if I’m chilled, he’ll bring me the thermometer and insist I make sure I’m not running a fever. He’ll proactively do things around the house, like clean bathrooms and take out the garbage. He’s been helping with Lauren, and he’s been very cuddly. He’s a great kid.

– Lauren turned five on Monday, and I almost forgot her birthday. Blame it on end of the semester craziness or chemo brain or just being a bad mom, but her birthday slipped my mind until late Saturday. It was a mad scramble to order cupcakes for school, bake cupcakes for home, figure out birthday presents (and shop and wrap), pull together decorations. Sundays and Mondays are my “worst” days – basically, I just don’t want to do anything – and those were the days I had to take to pull off all-things birthday. It happened. She was thrilled. And now she’s five. (Hot damn, my baby is five…)

When asked what she wanted for her birthday, Lauren replied, "Cupcakes!"

When asked what she wanted for her birthday, Lauren replied, “Cupcakes!” (She also got her first “big girl” bike, ballet classes, and some toys.) 

Going backward with grief: Ethan update (also genetic results are back)

While Ethan has handled the news of my diagnosis well at home, apparently he’s not doing as well at school.

His teacher emailed last night about problems staying focused and being disruptive in class. He told his teacher that he “wasn’t allowed” to talk about my cancer. He was also in trouble for saying “Paul Revere rode like hell to warn the Colonial militia about the British.” (OK, he shouldn’t have said “hell.” I get it. Also, thanks, History Channel documentary for putting that phrase in his mind.)

I went out for drinks with colleague friends last night, so I didn’t get home until nearly kiddo bedtime. My mom took Lauren upstairs for a bath, and I sat down with Ethan. “What’s going on?” I asked. “Do you know why your teacher would have emailed me today?”

He started to rub his eyes. He admitted that he has too much on his mind: my diagnosis trigger thoughts of my health, my mom’s health, and the deaths of his dad and grandpa. He also feels completely abandoned by Mike’s parents, who remain MIA (despite having multiple ways to contact us).

He’s afraid to say anything to the kids at school because he thinks a few of them will make fun of them or laugh about my hair loss. “Ethan, most of the moms know,” I told him. “And if anyone makes fun of you because I have cancer, I’ll call their parents directly and take care of it. Or I can take the kid out on the playground and kick their ass. Your choice.” (Wisely, he opted for me not to kick any kids’ asses.) I also assured him that I am fine, and I’m going to remain fine.

I assured him my mom is doing well. Her health issues seem to have disappeared, and other than arthritic pain from passing weather fronts, she’s doing really well.

We talked about Mike, and he cried because he can’t remember many of the good things about his dad anymore. I told some stories, and we laughed.

Overall, I think we’ve lost traction in the grieving process. We’re back to Ethan blaming himself for his dad’s drinking (“I should have stopped him. I should have told you.”), and Ethan worrying about what happens to him and Lauren if something happens to my mom or me.

The solution is just time. Time and talking. Time and talking and the generous understanding of those around him.

Good God, this kid’s been through a lot in his 9 years.

xxxxxxxxxxxxxxx

Unrelatedly, genetic testing is back and… of all the genes tested, all are negative for mutations. My genes are normal! This means genetics did not cause the cancer, and I don’t have an increase (compared to the average population) of getting breast cancer again or any of the other cancers examined in the test (brain, thyroid, ovarian). What it doesn’t answer, though, is why I did get cancer. It could be environmental. It could be a mutation on some other gene yet to be discovered. It could be that science just doesn’t have the technology to “find” the mutation yet in the genes examined.

I really don’t need the answer for “why me,” and I’m taking this as very good news. The information will help me and the medical team finalize surgery plans. It also means the kids do not need genetic screening for these cancers. However, Lauren will need to talk to her doctors when she’s in her early 30s about starting mammograms sooner than traditionally recommended.

Oncology and telling Ethan: things are moving FAST

After the MRI fail this morning, I waited around for one more appointment: the oncologist. Several survivors have told me that the oncologist is a super important part of the medical team, so it’s important to have confidence in the doc.

I checked in (the girls at the desk already know me by name – ugh) and sat in the same seat as last time. Again, I was the youngest by far. And again, the elderly patients were enamored by the TV (“The Chew” this time, not Kelly Ripa).

Suddenly three shrill bells sounded, followed by a message, “Medical emergency in the cancer center, infusion room. Medical emergency in the cancer center, infusion room. Medical emergency in the cancer center, infusion room.” All hell broke loose as 13 (by my count) medical people ran down the hall from all directions. It was about 30 minutes before an old man was taken down the hall to the hospital by gurney.

Soon after I was called by the nurse. We went through my medical history and the same series of questions I answered with the surgeon’s nurse earlier this week. I mentioned that I didn’t make it through the MRI this morning, and she said to make sure to mention that to the doc. The nurse took my vitals (blood pressure was a little elevated, but still within the normal range). When she went to take my temperature via my ear, she gently moved away my hair and said, “Oh, your hair is so pretty!” (I started to tear up.) She explained some of the things I could expect from chemotherapy and some of the recommendations this oncologist usually makes to his patients.

I waited for the doctor after the nurse left. “Fuck, this is an oncologist’s office. I have CANCER,” I thought. This was feeling really REAL. This was the toughest wait I’ve had so far. Oncology is SERIOUS. Surgery I get – cut it off, but chemo is scary.

The doctor came in, and I instantly liked him. He made me feel really comfortable. He asked the basics, then he said, “Do you want to just jump right into this?”

He explained the basics of chemo and how it’s changed over the years. Side effects, like vomiting and nausea, are manageable. He encouraged me to think of chemo as “medicine for cancer” not “poison.” His plan includes two phases prior to surgery: phase one will include Adriamycin (aka “Red Devil”) and Cytoxin (with neulasta to help grow cells lost from the two other meds), one treatment every two weeks (4 treatments total), and phase two will include Taxol and Carboplatin (second one only if my body can tolerate it without dropping my cell counts too low), one treatment each week (12 treatments total). With this schedule, I’m done with chemo by the end of May.

We talked about other chemo side effects like menopause (being in my 40s, instant menopause is very likely), when I’ll lose my hair (about 7-10 days after first treatment) and what I can/can’t do (no birth control pills).

Then he said, “You’ll start chemo next week.”

Back the bus up…WHAT?! (Tears. “Shit’s getting real,” I thought.)

We compared schedules – my class schedule versus his breast clinic schedules at two hospitals. We settled on Friday mornings. I don’t teach on Fridays and that gives me the weekend to recover.

He typed some notes in the computer, placed some orders for necessary pre-chemo stuff (a heart test, installation of a mediport in my chest) and wrote a prescription for lorazapam (to help me get through another attempt at the MRI). And he called the nurse to have a “chemo education session” with me.

“You’re young and healthy. I have no concerns about you in this process. I’m confident you’ll do fine with this,” he said.

The nurse came back in with a book to take home (so much casual cancer reading) and several documents detailing the various medications I’ll receive during chemo and those to manage side effects. We spent another 40 minutes talking about my fears and concerns. She printed a prescription for a wig (that’s weird to type!), we hugged, and I left the cancer center.

 

First thought when I got in the car: I can’t hide this from Ethan any more. He’ll notice when I start losing hair… I planned the conversation in my head on the drive home. I’ll tell him tomorrow – Ethan and I are spending tomorrow together (he has a doctor appointment so I’m keeping him home from school).

I got home. Mom had already picked up the kids, and Ethan was working on homework in the dining room.

I briefed my mom and told her I had to tell E. A few minutes later, Ethan said he was ready to review his work. I walked into the dining room. “Hey, pal, we need to talk tomorrow,” I said.

“Is it about your boob?” he asked.

“Yeah.”

“Yeah, I know something’s going on. But I don’t want to talk about it tomorrow.”

“Now then?”

I went back to the beginning. I found a lump, went to the doctor, had some images done. “The doctor told me the pictures looked funny,” I explained.

“Funny haha or funny strange?” he asked.

I made a face with my fingers in my ears and my tongue out. “Well, not funny haha. The lumps weren’t doing this. It was more like this,” I said as I made a sad face.

“It would have been funny if the lumps were making the funny face,” he said. Yeah, that would have been funny.

I continued with my explanation: they took samples from the lump with a needle on Christmas Eve, and they called with the results saying it’s cancer. “The good news,” I said, “is that it’s caught super early.”

“It can be cured?” he asked.

“Yep,” I said. “But the doctors need to do a lot to treat it.”

I explained chemo (“medicine for cancer that attacks fast growing cells. Know what other cells besides cancer grow fast? Hair. I’m going to be bald!” He laughed and studied me for a minute. “That’s going to be funny! I’m going to take pictures of you everyday bald!” Sure, kid, whatever floats your boat.)

I explained surgery. He asked, “You’re going to have ONE BOOB?!”

“Maybe,” I said. “They can rebuild it, though.”

“Will it be removable?”

“Maybe. I haven’t decided yet.”

“Wait… Do they rebuild your boob with metal? Will you have metal boobs? Oh! Wait! Super Mom! You’ll have metal boobs that shoot toxic milk!” he said.

He seemed really disappointed to find out my boobs will not be metal. Nor will I shoot toxic milk from my nipples.

“You’re handling this really well,” I said.

“You said that when you told me you were going to start dating. No big deal. You’re going to live another 60 years,” he said.

Nailed it, kiddo. Nailed it. (Well, not the metal boob part… Where that visual came from makes me a little nervous.)

Tomorrow: genetic testing