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

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

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.

Red devil – DONE

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

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.

Halfway through “Red Devil”

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!