Monthly Archives: February 2015

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…

Random thoughts during red devil #3

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I’m really loving wearing scarves. Haven’t even touched my “cranial prosthesis” yet. Scarves are easy, comfy accessories. And I may need to stop buying new ones. After all, I *will* have hair again someday, right?! (Actually, I’ll donate the scarves and other cancer “stuff” to a local organization after I’m done, which does nothing to stop me from continuing to buy more.)

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Chemo continues to be not a big deal. Yes, I’m tired and grouchy the week after chemo. And I have hot flashes and night sweats. But it could be so much worse. I’m very aware of how fortunate I am. And I feel thankful and blessed.

I fought with a tummy virus this week, though, and that was no fun. Thank goodness my mom was staying at my house because after being up all night with nasty gastro issues, there was no way I could’ve taken the kids to school on time on Thursday. Instead, I slept most of the day and did my damnedest to stay hydrated so that I could still have chemo on schedule. Luckily, my classes were either being taught by someone else or the students had group work day. I just really didn’t want dehydration or sickness to push my chemo schedule off schedule.

Blood work continues to fascinate me. From low lows one week to completely, textbook normal the next, I think I drive the nurses nuts each week as I ask them to chart it out. (They can do cool charts and graphs.) This week the doctor’s comments about how in doing included the word “awesome” about 10 times. The body is pretty freaking amazing.

Halfway through “Red Devil”

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Friday morning, I had my second (of four) chemos with the “Red Devil.” I’m told this is the most aggressive and the hardest part of chemo. Once these four, every-other-week treatments are done, I go to a weekly chemo regiment for 12 more weeks – but it shouldn’t be as tough on my body as the first phase.

In fact, my pre-chemo lab work last week was described as “phenomenal.” Some of the measures were even better than before I started chemo! There was a concern with how my body would handle the “Red Devil” since I’ve never had meds this harsh before. (How bad is the “Red Devil”? It cannot be injected through an IV like the other chemo meds. It has to be injected through syringe, by hand, so the nurse can make sure it’s going into a vein. Inject 3 ccs, pull back on the syringe to see blood, inject more meds, repeat. If it were to “escape” into my body, it would cause tissue and/or organ necrosis. Even when administering it, the nurse dresses in a sterile gown, mask, double gloves to protect her if any leaks out of the syringe.)

In particular, the doctor was interested in my kidney and liver functions with the blood work. When cells die, the kidneys and liver essentially filter them out so they can be secreted out of the body. The doc described it as little “screens” on the organs that the dead cells have to pass through. In some people, the dead cells build up and clog the screens, backing toxins into the body. This would be bad. However, my lab work shows everything is acting as it should. No concerns. Yay!

The anti-nausea meds and antibiotics fed intravenously during chemo make me kind of hyper for about 36 hours. Lots of energy. Lots of talking. B and I enjoyed a kids-free night on Friday – dinner out and then a nice cocktail. (I had a chocolate milkshake cocktail. No more “frozen treat season” for me!) On Saturday, B and the girls were over for dinner and a sleepover. It wasn’t until Saturday night that I started to get tired (and a little grouchy – well, really just an intolerance for kiddos not listening to me or acting out). On Sunday, I was okay until mid-day when I just started to feel lazy, similar to the Sunday after the first treatment.

As “hard” as the docs make this first phase sound, it really hasn’t been too bad. Yes, I’m super tired the week between treatments, which is because this is when the majority of the cell deaths occur and it’s before a secondary med kicks my bone marrow into overdrive. But there’s no nausea, no bone pain, no gastro-distress. I have headaches for a few days as a result of the anti-nausea meds (but if I have to choose between a mild-but-annoying headache for which I can take a Tylenol or puking my guts out, I’ll take the former).

Lazy, tired, little grouchy? It’s worth it: the mass I originally found in December has shrunk significantly. It’s not as prominent, harder to find, and feels “squishier” than it did originally. I’ll have another mammogram and ultrasound probably between my third and fourth “Red Devil” dose to show the change, but it’s super reassuring that the meds are working and KILLING the masses!

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.”