The Hospital

So, if I had to describe January, I would call it “achy”. My bones have hurt all of 2010. Everyday, I hurt just a little more, until on Wednesday, January 6th, I declared I was in too much pain to take the El to work and decided to drive and swallow the $28 parking fees. At work, I moaned, shook and pretty much snapped at everyone. Thursday, I took to my bed and started sporting a low grade fever (under 100 degrees). Thursday night, the night sweats started and my fever crossed the 100 degree mark. On Friday, I was even more miserable… and heartbroken. Friday was my daughter’s first gymnastics class. I had been looking forward to it since I signed her up in November. Instead of the mommy/daughter bonding experience I had planned, my husband took Evangeline to gymnastics and my sister came over to babysit me in case there had to be an emergency room visit. I gulped down some Tylenol and rallied a little bit, but even with the OTC drugs, my fever hit 101.4, and after gymnastics we took a family trip to the ER.

If you haven’t had the pleasure of an emergency room visit, let me dispel some myths for you. Since my diagnosis, I’ve pretty much visited all of the ERs in the greater Chicagoland area, and can assure you that no ER bares any resemblance to the long running TV drama of the same name. No one is ever in any hurry at the ER. As a patient, expect to spend many hours waiting, probably bleeding or in pain, until, finally, medical personnel notices you and starts ordering painful tests, the results of which will never be shared with you, the patient, unless you demand the results from multiple nurses, doctors and orderlies, at which point, someone will have to tell you the sample was lost or mixed up or contaminated and the painful procedure will have to be repeated.
To sum up Friday—Evangeline was a trooper (dancing, and giggling even though her little tummy was empty except for a few goldfish and some juice AND she only tried to rip out Mommy’s IV twice); our family spent 6 hours in the ER; no test results available; we were sent home with a thermometer and told to return if my fever reached 100.4.
Friday night, my temperature clocked in at 102. I took some Tylenol and tried to sleep. Saturday, Eric took Evangeline to her first swimming lesson without me (ditto on Friday’s gymnastics heartbreak). After swimming, my sister came over again, this time to babysit Evangeline while Eric and I headed back to the ER.
Saturday’s emergency room visit I would characterize as “cold”. No matter how many layers of clothes and heated blankets I bundled myself in, I just couldn’t get warm, even though, as one of the nurses helpfully pointed out, I was perspiring excessively. All of the same tests were run again, we were repeatedly questioned as to why I wasn’t admitted the day before, and then I was admitted.
From Saturday until Tuesday, I was hospitalized on the oncology floor. Multiple doctors poked and questioned me—the number 1 question being “can you spell Zevalin/ radioimmuniotherapy?” To be frank, on Saturday, I was scared that I might not be checking out. By Sunday, my fear had been conquered by frustration. My IV repeatedly fell out. No one, including the “IV team” seemed able to start a new IV on me without a minimum of 4 pokes, at which point, the poker would give up and promise someone else would be into poke me some more later.
I did start to feel better, but that only added to the frustration. You see, once I felt better, I started getting curious about the results of previous test and to question why new tests were being order. If you’ve stuck with me through the above rant, you pretty much know how my questions were answered—“results of Saturday’s blood cultures? Are you sure anyone took cultures? Maybe we should run that test again…” “results of Friday’s urinalysis? There was blood in the sample—someone will be in to explain what that means within the hour.” (yes, I am still waiting for that explanation.)
Finally, when yet another new doctor started asking me how my rash was (I NEVER HAD A RASH), I started asking when I was going home. This inquiry led to yet another new doctor introducing herself in a highly aggressive manner and explaining that she was the senior resident and that if I had any questions I should direct them to her. You know the routine—she was unable to answer any of my questions. When I asked when I would be discharged, she told be “the Team” would be meeting in an hour, and, if I would like, she bring up the topic of my discharge date (Team? What Team?!)
The Team did meet. I know this because they met in front of my hospital room door. I could only see a couple of the team members through the door crack, but I recognized most of the voices. The Team either couldn’t see me at all, believed cancer had rendered me blind and deaf, or believed patients can’t understand English; I assume one of the previous hypothesizes are true because, while the Team met right outside my door, they talked about me like I wasn’t there.
The Team was frustrated that I kept acting so frustrated. One doctor did suggest that questions about my rash seemed to make me really frustrated. The team decided that, if I wanted to go home, they should discharge me (that’s how the Team comes up with decisions? I wondered what would have happened if I had expressed that I wanted a new car.) After everyone agreed, one of the doctors opened the door wider and gave me the thumbs up sign. Shortly after the team meeting, the senior resident treated me to a second visit to let me know the team had decided I could go home today. I asked her what time I should expect to be discharged, and she stared back at me like a deer in headlights.
And now I’m home. I’m pretty bruised up from the care I received during my hospitalization, but I am feeling better everyday, so, while most likely I will continue to complain, I should probably start counting my blessings. A couple of those blessings—I was able to take Evangeline to gymnastics and swimming this week.

Bleeding Gums Janeen

So, starting this blog I had the best intentions. I planned to journal everyday, but, then, ya’ know… I got busy. Okay, I got unproductive. But then, I work up with a bloody mouth and I needed someone to complain to, so, voila, I’m back to my adoring public. Ok, well, I’m back to the blog I read sometimes.

To back up since I last blogged, I got Zavalin shot #2 on Wednesday, December 23rd. That afternoon, I checked into a hotel to ride out 4 days of isolation from my family. On the 24th, I was feeling pretty good; I worked out for the first time in forever. I watched my little girl open up her Christmas gifts via Skype. I was feeling fantastic until that Saturday night when I started feeling tummy sick and achy (my husband feels Zevalin is not to blame for the sudden sickness, but the massive amounts of cable TV I was watching, specifically “Overboard.”) But, when the husband and baby picked me up on Sunday morning I was feeling pretty good (hugging a perfect 2 year old is pretty great medicine). I returned to work on Monday. Admittedly, I’ve not been in the best of moods since returning to work. I’ve been really, really tired, like exhausted. I’ve been running a very low fever (99 degrees) and have had bone pain. However, I thought I was conquering. My last nap was January 2nd, and slowly I was pushing back my bedtime from 7:30, to 8:30, to 9p.m. The ouchy feeling in my knees, wrists and ribs was uncomfortable, and probably could have been solved with some Tylenol, but I’ve been stubbornly refusing pain meds in an attempt to get closer to drug free. So, while I was bitching, a lot, things could have been worse.

On Wednesday January 6, 2010, I work up in a lot of pain. My legs, wrist and ribs throbbed, and my mouth felt raw, as if I had been munching on popcorn kernels all night long. I wobbled to the bathroom mirror only to be greeted by a bloody smile. I flossed and brushed and flossed frantically in a weird OC dance, resulting in more and more blood in the sink.

And that might have been the best part of my day. Seriously, Wednesday sucked. I hobbled around like a hundred and four year old cripple with a running ouch and oui soundtrack. I succumbed to a little Tylenol PM at 6:30 and today the aches and pains are more manageable.

Which leaves one more stressor for me to whine about—I changed my insurance during January’s open enrollment. My oncology nursed left me a voicemail message yesterday stating that I had to start getting blood draws again. I don’t know who to ask for a referral for the blood draw and I can’t afford to chance the insurance not covering it. Recently, there was some HMO snafu, and I got bill for a blood draw that I don’t even remember getting (all the needles, needles, NEEDLES). Now some lab wants $1,000 I don’t have. Here’s hoping the tax return covers it.

Well, that ends the cancer rant for today. Tune in later for more of the same.