Tag Archives: first time

Still in a hospital bubble – and with a list of complaints

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I checked into the ER on Friday, and I really thought I’d be home by today (Monday), but I was just informed otherwise. I had a bit of a fever last night (just over 99.5), and while my white blood count is now above 10, they want to keep me until my count is normal AND there’s no fever for at least 24 hours, maybe 48 hours. I get it, but still.. My bubble burst while keeping me within my hospital bubble (prison). (Sad face.)

I feel good today, still have a bit of a stuffy nose and cough. But I’ve completely lost my voice. A side effect of one of the powerful antibiotics is “unusual hoarseness,” and that’s the one I got. I guess it’s better than the “very bad and sometimes deadly problems have happened” side effect listed. (No, that’s it, that’s all it says, no elaboration…so I win?)

Still, I’ve been really productive, this first day of spring break. Grading is half done, well ahead of the schedule I had made for myself. And I’ve started a list of complaints (most of the first world variety) because I really haven’t complained about much and honestly, I just feel like it. May I present:

“Things I won’t miss about spring break 2015”

  • Getting tangled up in my IV cord and having to “walk” my IV pole everywhere, well, everywhere within the confines of my room since I’m discouraged from leaving these four walls. So to the bathroom, to the sink, to the desk, to the recliner, to the garbage can. And sometimes getting so close to something, only to realize I. Just. Can’t. Make. It. without backtracking to unplug the IV and starting my across-the-room trek again. (On the positive side, at least they let me move around on my own.)
  • Falling asleep JUST in time for the IV to start beeping or my vitals needing to be taken or a new nurse starting her shift. On the same thought as sleeping, hospitals have major uncomfortable beds, pillows and linens (I am a linen snob – it’s one of my few splurges, and sleeping on sandpaper-like sheets with paper-thin, way-too-small-for-the-bed blankets has been…not fun. I miss 1,000 thread count – trust me, it’s worth it.)
  • Hospital food – except the mac and cheese. Damn good mac and cheese here (but the portion is WAY too small…) God bless my friend who brought me Panera for lunch today. Panera NEVER tasted so good after days of hospital food! Thanks!!
  • Being asked “did you tinkle in the hat” or some other inane question about my urination or bowel movements. Let’s just be adults and use grown-up words. Similarly, I’m not fond of a shift neglecting to empty the “hat” –  it only forces me to internally debate if I chart my own “output” or if I let the fucker overflow.
  • A remote control that only works if one is lying prone in bed. Sometimes I want to change the channel while walking my IV to the sink – not while lying flat in bed, thankyouverymuch.
  • Having to communicate the stuff I need from home to my mom by phone – only to realize that I didn’t specify WHICH drawer or WHICH nightstand, and worrying that she may have found -ahem- stuff she didn’t need to know about. She knows I’m an adult, right? I guess cleaning my drawers and finding better hiding places for things might be on the agenda after I’m discharged. Or why bother – she probably already found things she didn’t want to think about. (Mortified face.)

 

Chemo fever = hospital, do not pass go

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Very few people get really sick during chemo anymore. And while I kicked the “red devil”’s ass, I’m sitting in the hospital for the second night, not sure if this will be a two or three or five night stay. (Side note: this week is spring break – can I rock the fun or what?!)

Yesterday I was just feeling off. Grouchy. Irritable. Just not myself. I’d been battling a stuffy nose and some chest congestion for a few days, and I didn’t sleep well the night before so I chalked it up to being tired from a crappy night’s sleep. My mom can keep the kids a bit longer (no school on Friday), and I’ll take a nap soon, I thought.

I had a follow-up ultrasound to see how the masses reacted to the initial chemo. Great news – while I don’t have the final report yet, it was very difficult to even FIND one of the masses and the other shrunk considerably. Super encouraging.

I had labs and waited for my results. My cell counts were LOW, especially my white count. My white count was 0.6 – as reference, 3.5 to 11 is normal. On “off” chemo weeks, my white count had been low, around 2, but never below 1. The nurse told me to stay away from sick people and sent me home.

I went home, had lunch, and felt really tired. I fell asleep on the couch for a couple of hours and woke up shivering. I couldn’t get warm – three blankets and a half-dozen pillows covering me, and still freezing. I knew I had a fever, but I didn’t even have the energy to walk across the room to the bathroom to get a thermometer. I fell asleep again.

I woke up a bit later, and finally had the energy to take my temperature. 101. With chemo, the docs are very clear that anything over 100 needs immediate attention. I took my temp a dozen or so times in the next half hour. All pretty consistent in the 101 range. Shit. Neutropenic fever.

A call to the triage nurse who called the oncologist, and I was told to go right to the ER – immediately. After a TON of blood tests, chest x-rays, and nasal swab tests, plus a fever that just wouldn’t go down, the ER doc, in consultation with my oncologist, decided to admit me. I was not prepared to be admitted, but it’s just one night, right?

Wrong. The doctor informed me that this is usually a couple of days, at least. They have to make sure my white count comes back. That any infection I might have is defeated. That there’s no fever.

So I’m at the hospital, night two, hoping to go home tomorrow. Unfortunately, my fever has other plans. The oncologist came by today and explained the process – they can’t identify where I have an infection, so they’re treating my respiratory symptoms with heavy-duty antibiotics. And it’s just watching my cell counts, watching them get back to the normal level. Since my chemo plan included a shot in the belly during the red devil to hyper charge my bone marrow, we’re just waiting for that shot to kick in. It usually takes seven days, but it can take as long as 10 days.

I don’t like waiting. And I don’t like having my ass hang out of a hospital gown.

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.

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.”

 

Bald, part one

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Less than 24 hours after hair and makeup pampering for the boudoir photos, I was bald.

The oncologist reiterated on Friday that there was a 95 percent chance my hair would go in a week. A few other breast cancer patients who underwent similar treatment confirmed that it was day 14 when the hair went. My research confirmed no hair two weeks after the first dose of chemo.

I thought I’d hang onto my hair as long as possible, maybe proactively shaving it on about day 12 (given class schedules and other activities, Wednesday afternoon seemed like a good idea).

On Saturday morning, I took a long, hot shower. Washed and conditioned my hair. Ran my fingers through to detangle. I noticed some hair near the drain and moved it with my toes. More hair came up from the drain. Soon there was a pretty decent pile of dark brown curls in the corner of my shower. I got out.

I applied the leave-in conditioner; curl tonic, and styling crème to my hair. I felt the diffuser massage my scalp as I dried my hair upside down. For the first time ever, the diffuser kind of annoyed me. My scalp seemed tender. I finished with anti-frizz gel and hairspray.

I made a decision.

I drove to the salon to pick up my “cranial prosthesis.” Wendy was helping with a wig fitting, so I waited. The salon is nice. Nothing fancy. A small town hair place where older women get their weekly wash and style. Maybe some families have always gone there and continue going there with their kids and grandkids. It’s clean, comfortable. But there’s absolutely nothing fancy about it.

I talked to Carlie, one of the other stylists, who was working on the hair of a girl who looked like she was in high school. Carlie’s young daughter and her friend ran in and out of the room, playing with dolls and talking about shows on Nickelodeon. I played with my new wigs and tried on some hats.

When Wendy was finished, she helped me adjust the wigs to fit my head. “Do you have time today to cut my hair?” I asked her.

She asked if I wanted to go into a private room. I declined. I was sitting in an old hair styling chair. The yellow leather cracked. I just wanted to get it done with.

Wendy put a black cape over my shoulders. She ran her fingers through my curls. “I’m not really sure where to start. Can I cut it first, then shave?”

“You’re the expert,” I said.

Carlie recommended I take photos as it was being done. She handed me my phone from my jacket.

Wendy started cutting from the back. Snip, snip, snip. I could “feel” about three inches fall off. I swear I could hear it hit the ground. She continued, then placed her hand on my shoulder, “Are you okay?”

“Just keep going,” I said, taking photos. I was okay. I was in charge. This was my choice, not the chemo’s.

When my hair was about two inches long all the way around, she stopped to get the clippers. I started laughing to myself. “What if all this is a dream?” I thought. “What if I really don’t have cancer? What if the tests were wrong? Mixed up in the lab? I’m having my freaking head shaved, and maybe this isn’t real.”

The buzz of the clippers brought me back to reality. The blades felt warm, almost hot against my skin. She started in the back and moved to the sides. I realized that she was cutting it super short. I guess I thought it would be more “buzzed” cut than almost to the skin. Not leaving a half or a quarter inch of hair, but just a little but of stubble. But it was too late.

When she got to the top of my head, I asked her to leave a mohawk. “When else am I ever going to have one? I think the kids will laugh,” I thought. She cut and clipped my hair into one, but it looked way too harsh, so I had her cut it off, too. As the last few swipes of the clippers made their way across my head, Carlie stopped cutting the high schooler’s hair. “You look real pretty,” she said, smiling. “Really you do.” Her voice was soft, her eyes kind, and I knew she meant it. I started to cry for the first time through the whole cut. Little tears, but enough I had to stop and wipe my eyes.

I was adjusting to the image before me when the high school girl’s mom came in. She, too, was bald. Not because of cancer, but because she’s just crazy. “Bald is beautiful, baby!” she screamed, removing her pink knitted hat. Then she talked about kicking someone ass because they were taking too long in the tanning bed.

I tried on my wigs without hair underneath and made some adjustments to tightness. “You look real nice,” the crazy bald woman said. “You look pretty with or without that wig. I hope you’re going to be okay.”

Wendy rang up my purchases – two wigs, a wig cap (may or may not be necessary to help with any itchiness of the cranial prosthesis), and a brush (yeah, with curls, I didn’t own a brush that wasn’t full of the kids’ hair).

The salon wasn’t my usual hair place. But I was made to feel comfortable there through the whole process. Wendy and Carlie were very nice. Wendy spent more than 2.5 hours with me over the course of the week – from the fitting to the shaving to wigs 101, and the entire process was free of charge. I felt bad. At this kind of salon, with this kind of clientele, these ladies aren’t making much. I left Wendy a nice tip. She cried and hugged me. I cried and hugged her back. Then I drove home.

Going, going, gone.

Going, going, gone.