Tag Archives: parenting

Change in summer plans and mom guilt

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Last fall, my mom came across a great deal for a Bahamas cruise with a few extra/added days at an Orlando hotel. We thought this would be the perfect choice for this summer’s family vacation and we booked it for the four of us. Cruise AND a few days at Orlando parks with the kiddos? Fabulous!

We kept it a secret until Christmas morning, at which time the kids unwrapped an inflatable cruise ship and captains hats to unveil the “big surprise.” It was a hit! Kids were excited and talking non-stop about sleeping on a ship and going to the Bahamas.

Inflatable ship? Check. Captain hats? Check. Christmas cruise surprise.

Inflatable ship? Check. Captain hats? Check. Christmas cruise surprise.

The next day, I received word that I had breast cancer.

I (kinda) knew then that being on a ship this summer was not going to work. I didn’t know my treatment plan yet – hell, hadn’t met with docs yet – but regardless, being on a ship right after surgery or with lowered immunity from chemo was probably not a good idea. Still I couldn’t bring myself to say anything to the kids when they rattled on and on about their big summer vacation. I would change the subject or redirect the conversation to something else, but it killed me that I would eventually have to crush their summer vacation dreams.

This weekend, I just couldn’t keep it up anymore. Ethan started asking really pointed questions: when are we going? How are we getting there? How long on the boat? Can he see pictures of the ship?

“We probably need to talk, buddy,” I said to him over lunch on Sunday as he peppered me with questions. “I can’t be on a ship this summer, so we’re going to have to change things a bit.”

I explained the lower immunity I’ll experience between chemo and surgery this summer, and how being confined on a ship could compromise my health – and could delay the rest of my treatment plans if I get sick.

“But grandma and Mr. B and I have been talking about an alternative,” I said. “What if Mr. B and the girls went on vacation with us? Somewhere else? Not on a ship.”

Ethan seemed to take the news okay. He’s disappointed that he won’t be on a cruise ship this summer, and that he won’t be going to Florida or seeing an ocean. But he also understands that breast cancer isn’t something we signed up for, that we just have to deal with the cards we’re dealt.

So summer plans will be a couple of smaller trips – a roadtrip wth B and the girls (and my mom) to a southern Indiana amusement wonderland, camp for a week, boating on the river with my uncle, maybe a waterpark visit here or there.

It isn’t what I wanted or what I planned, but it is what it is. I hope the following summer to make it up to the kids. I feel a ton of mom guilt with giving them a cruise then taking it away because I’m sick. Hell, these kiddos have been through so much I just hate disappointing them – even if they seem to “get it.”

The last two summer vacations involved a beach front condo on the Gulf Coast. Making memories...

The last two summer vacations involved a beach front condo on the Gulf Coast. Making memories…

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

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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”)

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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

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(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?!?

Oncology and telling Ethan: things are moving FAST

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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