Category Archives: Kiddos

Fatigue, Brows, Oxygen, Kiddos – Updates

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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.) 

Almost 100 percent

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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.

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…

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.