Scan on Thurday

I have my first follow up scan scheduled for Thursday. I'm really nervous. Lately, I feel tummy queasy constantly, and I've had pretty regular dizzy spells. Yes, my symptoms pretty much scream psychosomatic, but, still,... I don't think I could take any more chemo.

May 13th

The big day. I kissed Eric goodbye and dropped the little one off at daycare. I stopped at 7-11 to buy my first lottery ticket ever [SPOILER ALERT: I didn't win]. As soon as I checked into the hospital, I was issued a surgical mask because I was still struggling with pneumonia. This was the first time I would be CT scanned at my new hospital, and I liked the new rules. In the past, I had been instructed to got without food or water for 12 hours before the scan, except for the last hour when I had to gulp down 2 huge barium shakes. My new hospital just required a 4 hour fast. Once at the hospital I was given a short glass of what I thought would be refreshing water, but turned out to be some concoction that, judging by the taste, was mostly bleach and chlorine, followed by a barium shake. After the CT scan of my neck, chest, abdomen and pelvis (all in all a relatively quick and painless process), I was weighed, blood pressured, temperature taken-ed and poked for blood tests. I headed out to the waiting area to discover my husband waiting for me (surprise!). When my name was called, we followed the medical assistant into an examining room and waited some more. First the nurse practitioner examined me ("exam" means to poke neck, chest and tummy looking for lumps), then the doctor came in and examined me. Then we waited for the CT scan results. Then the doctor came in and waited with us for the CT scan results. Then the doctor sent the nurse practitioner to find my CT scan results; no luck. Then the doctor went to find the CT scan results; no luck. Then the doctor took us to the back office to look for the CT scan results; no luck. Finally, the doctor told us to go home; she would call us with the results.
Remember, I've been waiting for these results since December, so, I did turn the bitch on a little when the doctor suggested we leave the hospital with no results, but I was assured I would be called by the end of the day with results-- so we went out to eat.
I was starving. Remember; I hadn't eaten all day (first to prep for the scan, and then because I was too nervous). I ordered madly and Eric uncharacteristically agreed to all my demands. I placed my cell in the middle of the table. We ate in silence, staring at the phone. After dinner but before ordering dessert, the phone rang---
Janeen: Hello?
Voice over the cell: Janeen, It's Dr. ___'s nurse. I've got some bad news.
I felt my chin start to quiver and looked around the restaurant. I was determined not to cry in public, but I wasn't above crying in a public bathroom, so I started scoping out the best route to the ladies' lounge.
Voice over the cell: you have pneumonia
Janeen: (screaming) I don't care about the pneumonia! what about the cancer?!
Voice over the cell: cancer? the cancer's fine! [but she stretched out "fine" like "fffiiiyynnnne"]
Janeen: (frantic, but not so angry) Fine? what does "fine" mean?
Voice over the phone: remission

So, that's that. Eric declared "so this is a celebratory meal." I took a deep breathe and started texting family and friends.

Sooooooooo-- Today is June 6th. Why did it take me so long to finish up the blog? The good news has taken awhile to sink in. I'm really waiting for a follow up call from the doctor saying I've contracted some new life threatening illness... but I guess it really is going to be ok.

Life does seem lighter. Now that I have a good 30 years to pay it off, the debt we've accumulated over my illness isn't bothering me as much.

So, in sum-- Zevalin works. Three cheers for radioimmunotherapy.

restaging

Tomorrow is the big day. I have a CT scan followed by a doctor's appointment. Tomorrow I find out if the Zevalin worked.

This morning was my day to drop Evangeline off at school. We both were dressed and ready to go early, which left a little extra time to cuddle in front of an episode of “Dora the Explorer.” We were singing along, “Dit, dit, Dora, dit, dit ,Dora; Swiper-no-swiping; Swiper-no-swiping; O Man,” when I interrupted the theme song with coughing, which morphed into hacking, which turned into a sprint to the bathroom and, finally, loads of purple vomit in the toilet. Yes, purple. No, I can’t think of anything I’ve eaten that could remotely be described as purple. The possibility of night eating has crossed my mind, but I can’t think of any food or combination of foods in my house that would lead to purple vomit. Do you think I’m night breaking into the local Save-A-Lot and consuming grape soda?

Healthwise, it’s been a rough couple of weeks. On April 21^st, I work up inexplicably cranky. I yelled at drivers for obeying their traffic signals when I wanted to jaywalk in front of them. I answered my local Streetwise vendor’s “good morning” with a “hmph” [I swear the “hmph” was me choking off a “humbug” on the way out of my mouth—I was that cranky.] During a meeting with my supervisor and partner that afternoon, I felt the room temperature drop a good 30 degrees. Their matching confused looks in response to my repeated question, “why is it suddenly so cold in here?” led me to believe that I was not only cranky, but sick as well.

The fever hit the next day, and I stayed in bed on Thursday and Friday. By Saturday, my temperature broke 101 and I emailed my hematologist to beg for drugs. She prescribed a Z pack. Apparently, Z packs are prescribed for everything from pneumonia to gonorrhea [when Eric read the latter, he asked me if there was anything I wanted to tell him]. On Monday, I stayed home from work. My hematologist phoned me and told me that she would see me anytime I would come in. I decline an appointment because I’ve developed an irrational belief that as long as I don’t go to the hospital, I’m not really that sick.

The lowlight of this sick spell was the nose bleeds. I went through boxes of Kleenex, then dish towels, then I would hold my head over the toilet. Finally, when I decided that I had sacrificed too many sweatshirts, blankets and towels to my blood falls, I just stripped down and napped in the bathtub.

So to further humiliate myself by making compromising facts public, I, Janeen, admit that I’ve read the entire Twilight series. Not only have I read the entire series, I’ve hated the heroine, Bella, since chapter one. I can’t stand her constant complaints about her superlatives—too many suitors, too deeply in love, too beautiful, too smart, to self-sacrificing, etc. I think my obsession with the series can be partially contributed to a hope that at some point one of the attractive vampires or virile werewolves will maim or kill Bella. Anywho, I bring this up because, in Book 1, the dashing vampire Edward is forced to carry Bella to the nurse’s office “The Bodyguard” style because the smell of blood makes Bella attractively woozy. Bella describes the scent of blood as metallic. To bridge this thought back to me—as I was soaking in a tub of my own blood, I thought, “this does smell like copper.” Dammit—that makes Bella always right as well. Jacob should have eaten her.

I am back at work this week. I feel loads better, but, obviously, still can’t shake this consumption style cough (and the purple vomit is worrisome). On the 15^th, I see my hematologist and get re-staged—so, for better or worse, we’ll know if the Zevalin worked.

There is some good news—my period is back. Given my multiple of health issues, the return of Aunt Flo doesn’t equate to the possibility of a housefull of babbling babies, but it is making me feel youthful and not so close to death as I had before.

Lump

I found a large round lump on my lift side jawline. It's almost perfectly symmetrical and hurts if I poke it (more than most things hurt if poked-- come on, you know what I mean). It feels like a marble under my skin, but the marble isn't immediately noticeable on sight. Eric has done some Internet research to try to figure out what's there. There shouldn't be a lymph node or sinus cavity on your jawline, right? What's there to bulge? It's worrisome, but not my only symptom: I've had multiple nosebleeds and my ass is dragging (literally and figuratively-- the Janeen paradox: if I don't start doing lunges soon, my butt will skim the concrete on my walk to work, but I'm just too tired to even imagine myself exercising.)
I see the doc on Thursday. I'll report back.

Last Nap

Today is my last Thursday afternoon nap. Next week I go back to working full time. Evangeline is off to preschool. I don't know which I find scarier. I'm feeling really good, but by Wednesday night, I usually fall asleep around 8:30. Also, earlier this week I had the nosebleed to end all nose bleeds. Probably unrelated to cancer or Zevalin (right?), but it makes me think-- if I've almost run outta' numbers on my personal calendar, do I really want to spend my days at the office? If I'm not going to make it to Evangeline's wedding, I don't want to miss a moment with her now. That thought has led me to some pretty creepy behaviors, like watching my daughter sleep and counting her inhales and exhales.

Whatever. No matter how misty I get about time away from the little one, it has to happen. The medical bills are out of control.

As far as chemo type side effects: This last week the hot flashes seem to have dried up. So that's a plus. And I've gotten a few little pimples on my nose which makes me feel like my body is acting closer to normal. I've been jogging with the baby fairly regularly. OK, "jogging" might be an exaggeration. I've been doing sorta' a shuffle behind the jogging stroller. Stop your snickering-- it counts as exercise.

Node Scare

Time's passed-- lots of time-- and I still don't know the results of my treatment. I'm feeling a lot better, but I don't feel different. I'm not any more or less bumpy than last Easter (when my hair fell out). Until last week. I found a huge lump in my in my neck. One day it wasn't there, the next day it was. It was oddly positioned, so, no matter how many mirrors or at what angle I tried, I just couldn't see it. It was hard, and hurt when I tried to manipulate it. I didn't want to say anything to my doctor for a couple reasons: 1) I just can't take any more bad news, and 2) I've been behaving badly towards medical professionals lately and didn't want to have to apologize for prior rudeness in order to ask for something now (I'll tell you about it some other time).
So, I've been going about my business trying to pretend that I didn't know that I'm dying... again. And things just haven't been great. Our finances suck. We tried to refinance the condo, and it turns out we're so far underwater that we're hanging out with those creepy glow-in-the dark fish. Eric had to get a second job and dropped a class we've already paid for. He's constantly sleepy and cranky. I've arranged for more hours at work, so I won't be able to spend as much time with Evangeline, so I'm grumpy. Whenever we open our mouths, we seem to say something mean to each other, so we're mostly just quiet and awkward.
And Evangeline has hit a new stage. I was warned that the "mines" were coming, but Evangeline has been surprisingly generous and opened to sharing. Instead, the terrible 2s have been all about "I never ever" or phonetically "I neber eber." Evangeline neber eber uses the potty chair. She neber eber stops kicking the cat. She neber eber takes a nap-- you get the idea.

All in all, the stress levels in our household have been toxic.

Finally, reluctantly, I asked Eric to check the lump in my neck. I was ready for him to get out a flashlight, examine the bump, madly goggle, and get back to me later with alarming possibilities. Instead--

"It's a zit."

"What?"

"It's a great big pimple."

"Are you sure? it doesn't feel like acne."

"It's a zit."

That night I popped the neck lump while I was in the bath tub. It popped like a pimple. The atmosphere in our house is still tense, but I feel better. In fact, I've neber eber felt so good about a zit.

week 9

So, to review-- my immune system was supposed to hit its weakest point between weeks 6 to 8. This is week 9, and, frankly, week 9 sucks more than week 6, 7, or 8. I'm not sleepy, but my body feels like it's filled with sand. I'm having trouble filling my lungs with air. I'm noticing lots and lots of bruises, but I don't remember injuring myself. And the bruises are in strange places, like inside my knee. I am bleeding a lot. All ten fingers are covered with multiple paper cuts and each cut was a gusher. And each cut seems to catch me by surprise: usually when I'm meeting a new person in a professional capacity far away from any kind of stop bleeding supplies. I've been trying to ball up my fists to nonchalantly stop the bleeding, leaving bloody fingerprints on the bottom of my palms. I wouldn't want to shake my hand.

I think the issue is that I've had a "everthing will be better if I can just make it through week 8" mantra since the Zevalin injection. Now, I'm on week 9 and I think I've wasted all my andrenoline on the last 8 weeks.

ode to shampoo

Last Wednesday, I hit week 6. During weeks 6 through 8 after the Zevalin injection, my immune system is supposed to hit its lowest point. The good news: I've hit bottom! Things can only get better from here out. This is mile 16 of my marathon, and, hey, once you've been running for 16 miles, what's a measly 10 and change more?
How am I feeling, you ask? I've been pretty worn out. My daughter's bedtime is 8 p.m. Um, in theory Evangeline's bedtime is 8 p.m. After multiple requests for water, Purple Bunny, Pooh Bear, White Blanket, a story, one more story, a kiss, a hug, a kiss from Daddy ("no Mommy"), a hug from Mommy ("no Daddy"), etc., the time is usually closer to 9. About midway through our bedtime negotiations, Mommy falls asleep. I do have more energy during the beginning of the week, however, I can't seem to make it through Thursdays without at least 1 nap.
Regarding pain, I am feeling strange pinches underneath my ribs. They're pretty consistent throughout the day, but also easily ignored.
More disturbing, at least for me, I haven't had a period since November. I've been looking forward to being pregnant again, to an infant (or 2) and to Evangeline getting siblings (she'd be a great big sister). Daydreaming about the little ones yet to come has gotten me through chemo sessions and side effects. Now it's looking like treatment is taking more than just my hair; it's taking the future I hoped for.
Speaking of hair-- isn't it great having some?! No joke-- currently I look like a giant Q-tip. I'm sporting an uneven layer of spiky in places, curly in others 'fro. It's not pretty, but requires shampoo, and, really, is there anything better than shampoo? Shampoo smells wonderful. Better than perfume. Better than food. It's the comforting just-a-little-more-than-clean scent. And the act of shampooing is ssssoooooooo soothing. Squish, squish, foam; the lather feels good in your hair and makes your hair feel good in your hands.
In sadder news, my already small family is taking a hit. Our marriage may not make it to the end of my Zevalin treatment. I'm hoping I hit bottom on that front as well.

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.