Category Archives: We’re Going to be OK

Red devil – DONE

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I finished my last “red devil” treatment today. It was not without incident.

While having my labs drawn, my port wouldn’t work. Needle in, nothing out. Turns out, the end of the port was clogged. It’s fairly common – platelets clog the end of the port, forming a mesh-like cover and making it difficult (or impossible) for anything to pass. The techs and nurses were able to push saline into the line, but they couldn’t get anything to come to back out.

The solution: a medication that the nurses compared to Drano. It basically “eats” away at whatever is clogging the end of the line. It took an hour, but the medicine worked, and the port works better than ever. It’s so crazy to think a toxic “Drano”-like substance along with the “red devil” were injected into my body today. My blood is a pretty toxic cocktail.

My lab work today revealed that I’m anemic. It explains the fatigue I’ve been experiencing this week (what should have been my “good” week). I’m planning a week of red meat and iron-rich foods in the coming days.

Next week is an off-week. I’ll have labs on Friday and an ultrasound to see how the masses have changed. Honestly, I can’t even feel them anymore. The doc couldn’t even FIND them during the exam today. Then following week starts “normal” chemo.

So after the first phase of chemo:

– I still have hair – well, hair on my head (and brows and lashes are intact). I’ve lost all the hair on my legs, underarms and bikini area. (Better than laser therapy or waxing!) But my head still holds onto the little spiky hairs, except for an area above both ears on the sides (think where infants lose their hair). The kids are convinced that it’s growing out. I’m not sure it’s GROWING, but it’s sure not gone like I was told it would be at this point.

– I’m still having regular periods completely on schedule, which confuses the docs. Apparently, I shouldn’t be menstruating, and menopause should be kicking in. I have hot flashes and night sweats, but really no other menopausal symptoms. I have super hormones!

– My skin is crazy dry. I’m using a ton of lotion, but nothing helps. My skin is also getting SUPER sensitive – like the seams of pajama pants HURT. I remember when I was shopping for scarves and the two women were offering advice. They laughed and said something like, “You’ll become very aware of seams and where they are.” I thought that was kinda crazy, but it’s true, and it’s REALLY uncomfortable.

– The masks offered in doc offices for people who have colds? Yeah, apparently there’s latex in them. I wore one when I came in for fluids last week, and now my face (the part that was under the mask) is covered in a red, flaky rash – the same reaction I get from latex. It’s itchy and somewhat painful, and I just have to wait it out to get better. Fingers crossed that’s soon because it’s my face.

It feels good to be done with this first phase of chemo. I really don’t know what to expect for the next 12 weeks, other than being told it’s “easier.” Whatever that means.

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.

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.