Ours

“Beautiful children. Are they all yours?”

We stopped for lunch at a mom-and-pop restaurant in a smallish town in the Upper Peninsula of Michigan, on our way home from spending Thanksgiving with B’s parents. (More on that another time.) An older woman behind the counter asked the question.

B was carrying his youngest daughter, following the server who was taking us to our table; Ethan was close behind, talking nonstop in B’s ear about something or other; and I was shepherding Lauren and B’s other daughter as we traversed the small entry of the restaurant, filled with knick knacks and tchotchkes for sale.

“Yes. Yes, they are,” I said, barely making eye contact with her as I made sure the girls’ heavy winter coats didn’t knock over something I really didn’t want to buy. I was busy holding the hand of one girl while directing the other by the shoulder.

The woman behind the counter followed it with, “But you both look so young…” and a sort of tsk-tsk sound.

Crazy lady, I thought. Of course they’re ours. What other kids would be with us? Does she think we found some kids alongside the road and brought them in for Swedish meatballs and limpa bread?

We were at our table at the back of the restaurant when it finally hit me what the woman meant.

“Are they all yours?”

Oh… are they OURS? Like O-U-R-S, mine and B’s? Well…

I felt a little foolish for  misunderstanding the woman. Yeah, they’re ours, but not technically O-U-R-S. Like if we start getting into if they’re our biological children and genetics and stuff… well, then…

But then, I realized I didn’t misunderstand the woman at all. YES, they are O-U-R-S. Damn, it, all four of them. For all their faults and all their goodness. For all the little arguments we referee. For all the cuddles we share. For the goodnight stories and kisses and late night movies and board games. For the helping make Christmas cookies. For the knock knock jokes at dinner. For the tears, for the laughter. For better or worse.

“Are they all yours?”

Hell, yes. Yes, they are mine. Yes, they are B’s. They, all four of them. They are ours.

Almost 100 percent

I’m back.

Last week was rough. A GI virus that took down my mom and Lauren for about 12 hours spent about 10 days rattling around my body. It didn’t help that it was my “low” week so my body had NOTHING to help the fight.

Day by day, I tried to stay on top of rehydration, but the faster I put fluids in, the faster they were (violently) ejected from my body.

I went to work every day, but I won’t win any awards for my performance – it was all I could do to teach the bare minimum to stay on schedule. Usually my teaching style is very dynamic. I move around a lot, making use of the entire classroom. Last week, I didn’t leave my chair at the front of the room.

I slept. A lot. Because I was up all night, I slept until around 10 a.m., got up, went to work, came home, slept more. I had zero energy.

I was REALLY grouchy, and sometimes dizzy and light headed. I almost passed out after climbing about 40 steps in the parking garage – 40 freaking steps and I had to sit down for 10 minutes on the frozen concrete because I was seeing black spots. Good thing I didn’t park where I normally do or I definitely would have passed out on the walk to my office.

On Thursday, my tolerance reached a low point when I got mad at my thermos for keeping my soup hot and at my scarf for hugging my neck too tight. Getting angry (like, CRAZY mad) at inanimate objects for doing their job? Yeah, that’s not right.

I had been talking to the doctor and his nurses all week. Various tests came back normal. I finally laid it out for the nurse, “If I can’t get in today, I will go to the ER. I desperately need fluids, and I just can’t drink any more.”

I drove straight from work to the cancer center. Two bags of fluid plus magnesium and potassium and instructions for how to manage the GI virus symptoms, and I felt better. I slept through the night on Thursday.

I was still tired and weak and grouchy on Friday. I went shopping with my mom – as a birthday/Mother’s Day present, I wanted to buy her a new oven. She found one she liked and the sale was ending, so we had to go on Friday. It was all I could do to tolerate the appliance salesdude and his incessant repetition of the installation instructions. A trip to Target afterward was cut short because I just wanted to go to sleep.

Reread that – I didn’t want to shop at Target because I was tired. That’s pretty freaking tired, people.

My mom took the kids home with her Friday and Saturday nights so I could rest without interruption. I also decided to ignore the clear liquids/BRAT diet instructions I had been following for the past week. I was going to eat whatever my body told me it wanted. I needed nutrition (and to actually CHEW food) – more than comes from clear broth or jelly toast. Eating felt good.

By Saturday afternoon, I was feeling much better. By Sunday, when the kids came home, I was back to myself. Today, I feel about 95 percent “me.”

Friday will be my last dance with the red devil. I’m doing everything possible to stay on top of my health to get through the next few weeks before “regular” chemo starts. I’m told that will be the easy part.

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.

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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.

Bald, part two (“The reaction”)

I drove home wearing one of my new wigs. It felt a little unnatural, but not uncomfortable. I kept touching it to check to make sure it didn’t slip. (It didn’t. Darn things are pretty secure.)

Walking into the house, B had lunch on the table for the kids. “I like your hair, mommy,” said Lauren. B’s oldest daughter echoed the sentiment with a comment about how she liked it “with no curls.” Ethan was not as enthused.

“Oh, mommy, take it off!” he shouted.

“Well… You might not like that either,” I said and explained that I had my hair shaved.

“I can’t even look at you!” he said loudly.

The three girls, however, were excited about the wigs. After lunch, I tried on the other wig (aka, “The French Assassin”) to more praise. “You have bangs like me, mommy! We are twins!” said Lauren.

I asked if they wanted to see my head without a wig. “Yeah!”

I removed the wig. “I like it,” said Lauren, then she ran off to play.

B’s youngest daughter, however, was not amused. She started crying and ran to her dad to be picked up. She was afraid of me. She stopped crying when I put on a scarf. (She was better the next day about seeing me without hair.)

I tried on scarves and turbans throughout the day. But I was most comfortable with nothing on my head.

That night, Ethan came into my room before he went to bed. I asked him to sit next to me on my bed. “Hold my hand,” I said. “You need to be able to look at me.”

I explained this was temporary. My hair would grow back. The fact that it was going to fall out meant the chemo was working. I told him he couldn’t NOT look at me between now and summer. Slowly, he turned his head and looked at me. We made a few jokes about it, and he relaxed. He still wouldn’t touch it (unlike Lauren who still wants to rub my stubbly head all the time), but he could look at me.

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I called my mom when I was driving to the salon and told her I was probably going to shave my head that morning. I called her again after it was over. I didn’t know until the next day that she was really emotional about my hair. She apparently cried all day about the loss.

When she came over on Sunday, however, she was better. I had a hat on, and I asked if she was ready before I took it off. “OK…” she hesitated.

“Oh my God!” she said. “You look so cute! You look like your dad!”

“Like grandpa, but more femin-in-in-ized,” said Ethan from the other room.

Once she saw me, she was okay, hair or no.

I guess I do look like my dad….

I guess I do look like my dad…  (Although, according to Lauren, I’m “less gray.” Good point, Laurenator.)

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I think I handled the hair-thing pretty well. It was fun to touch the stubble left on my head. It was fun trying on the scarves and wigs and turbans I bought a few weeks ago. But after the kids were in bed, and B and I were sitting in the living room having a glass of wine, I started to tear up. I was okay with the cutting of my hair, but tears just wanted to fall. Not crying, just tears leaving my face. I wasn’t sad; I knew I as in control. It was my decision to cut and not wait for it to fall out. I couldn’t even articulate why I was teary. I think the emotions of the day just caught up and exploded (a tear explosion!). I was fine about 10 minutes later.

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 On Sunday, Lauren climbed onto my lap and rubbed my head. She leaned down to kiss the top of her head and pulled away, complaining about the stubble against her lips. Then she held my head in her hands and said, “Mommy, I love your body. I love your new hair. It’s fun.”

 

Genetic testing and other news

(Don’t miss the biggest breakthrough at the end of this post…)

On Friday, I met with a genetic counselor to determine whether or not it made sense to undergo testing. I filled out paperwork prior to the appointment, but I was not prepared for the in-depth examination of my family tree.

The counselor was much younger than I expected, probably in her 20s/early 30s. We went through each person in my family, their medical history, current age (or age and cause of death), through my grandparents’ generation. The counselor was looking for any patterns of certain cancers, of which there weren’t any in order to justify testing (even through she said up front that my age at diagnosis was enough to qualify me for testing).

Next came a slide show reviewing basic biology stuff – what’s a cell, where genetic information comes from, likelihood of sharing traits from one generation to the next.

Finally, we got to the reason I was there, discussion of the BRCA 1/2 genes and the testing. There is a significant increase in the likelihood of a person with the BRCA gene to get breast cancer. I’ve seen different stats through my research, but the ones used by the counselor indicated that a woman in the general population (no BRCA link) has a 7-9 percent chance of getting breast cancer. If she carries one of the BRCA genes, that risk increases to 56-83 percent. (Similarly, a man in the general population has less than 1 percent chance of breast cancer, but if he has the gene, that risk increases to 7 percent.)

We talked about how my medical decisions would change based on the knowledge of my BRCA status (I’d have both breasts removed), and how that would affect my future chances of breast cancer. The GREAT news is that I didn’t cry – the first appointment since my abnormal mammogram in which tears were not shed. Most of my tears have been around telling the kids, but now that it’s done, I’m okay.

Then we talked about testing options. Genetic testing is still really new, and there have been significant advances in the last few years. The test can be really expensive ($5,000+) but once someone in the family has it done, if he/she shows any abnormalities in the genes, other family members can get tested for just a few hundred dollars. Their tests would not be as comprehensive, but would only scan the area of the gene with the defect, i.e., if there was a problem with the 1,568th part of my gene, other family members would just have that position examined for a similar problem. So if my test shows a genetic tie to breast cancer, my sister could be screened, and based on her results, my niece could undergo testing as well. (Interestingly, the genetic test cannot be performed on anyone under the age of 18. An individual must decide for him/herself whether or not he/she wants the knowledge. So my kids will have to wait to learn their genetic risks.)

I could opt to JUST know my BRCA 1 and BRCA 2 status. Or, I could opt to know that plus the status of a half-dozen other genes with a cancer influence. With the second option, everything tested has recommended medical guidelines for future monitoring, so if I was positive for a gene that could cause thyroid cancer, I could have proactive screenings and tests to monitor the organ’s health.

There was also a third option: knowledge of just about every cancer-causing gene known. Many of these genes and their cancer-causing links are REALLY new, and there are no established guidelines for monitoring (and therefore, no insurance will cover the cost of proactive care).

I opted for the second test – BRCA status plus a handful of other “known” genes with recognized screening/treatment protocols. After a simple blood draw and two small tubes of blood, I wait for two to four weeks for the result.

 

In the meantime:

  • Ethan continues to handle the news of my diagnosis and treatment REALLY well. He’s decided he’s going to take a photo a day of me to chronicle this journey. If it helps him cope, I’m in! More than anything I think he’s focused on his own medical news – we learned Friday that he would need surgery to correct a foreskin issue. I was in genetic counseling during his appointment, so my mom went with him. Apparently, when the doc told him the treatment wasn’t working and he’d need surgery, his response was “no.” Ethan and I are looking at two options, and both of us agree that the least invasive one (small incisions versus full circumcision) is worth exploring. I’ve assured him that taking care of this now is for the best and that this will be one of his favorite body parts in the near future. That got us WAY close to, but just shy of, “the” talk.
  • I bought four new hats this weekend. (Yay for winter hat clearance sales!) I’ve watched several tutorials on scarf tying. I’m heading to the hospital wellness center today to talk about wig fitting and other chemo necessities. I can’t believe that treatment starts at the end of the week. I’m ready, but it’s happening so soon. I keep telling myself that there has to be a beginning in order for there to be an end.
  • Major good work news: I was granted a course reduction for the semester, meaning I’ll teach three (instead of four) courses this spring. The rest of my time will be dedicated to student advising, which gives me the flexibility I need for doctor appointments and much-needed rest. (One class on Mondays and Wednesdays, two classes on Tuesday and Thursdays, no classes on Friday.) I had to jump over a couple of pretty big hurdles to get this, but it’s a REALLY big deal. Classes start next week.
  • And I’m saving the biggest news for last… I’ve had three milkshakes since my diagnosis in December. For those who know me, you know this is a GIANT shift in my long-held belief that there’s a frozen treat season, and one should absolutely not consume frozen treats (milkshakes, ice cream/custard/fro yo, frappes, etc.) from Labor Day through Memorial Day. Turns out, milkshakes taste pretty freaking great any time of year. Who knew?!?