Now that I am free, I can finally tell my tale. My story begins on a beautiful, autumn afternoon...
Monday, November 3
1:00 PM: After waiting for nearly a week, I finally received a phone call from my oncologist to report my PET scan results (she had contracted a cold, which is why she couldn't call earlier). Great news! My lymph nodes looked great and we celebrated my completion of chemo! However, my lungs looked hazy and my onc wondered if I had any pneumonia symptoms. Except for a dry cough, which I've had for months, I felt fine. My onc and I suspected Bleomycin—one of the drugs I received as part of my chemo regimen—was the culprit, since it often causes lung damage. Oh joy. Hopefully my lungs will repair themselves over time.
I said farewell to my oncologist, knowing we would meet on Thursday to discuss my post-chemo care in more detail. I also wished her a speedy recovery.
3:20 PM: A massive headache developed, which I suspected was because I hardly ate or drank anything all day since I was anxiously awaiting my oncologist's call. On a whim, I took my temperature. Never can be too careful, especially with pneumonia lingering as a possibility.
Temp = 100.9 ºF
Yikes. But I didn't want to call it in. I figured, let's eat some food and drink some water. That should take care of the headache and hopefully the fever. I could have taken Tylenol for the headache, but it would also reduce the fever and interfere with future temp readings. During the Great Belly Button Fiasco (GBBF) a nurse chastised me for taking Tylenol for that very reason. Things are more complicated as a chemo patient.
I continued to monitor my temperature and created a variety of excuses to delay calling the Cancer Center.
4:00 PM: 101.2 ºF
I should take a shower. If I end up in the ER tonight, I should at least be clean.
4:30 PM: 101.2 ºF
That shower was really hot. I need to cool down.
5:00 PM: 101.8 ºF
No no no no no. I'll just wait until 6:00 PM.
5:30 PM: 101.5 ºF
See! My temp is already going down.
6:00 PM: 101.9 ºF
I called the After Hours Urgent Care line and left a message with the receptionist.
6:15 PM: The oncologist on-call called back and recommended I report to ER for precautionary tests. *Sigh.* At least I took that shower earlier.
6:30 PM: "Hi, Mom and Dad! Wanna accompany me to the ER?"
7:15 PM: Parents pick me up and we're on our way!
8:00 PM: Checked into ER. Nurse took my vitals.
Temp = 98.6 ºF
Great. I felt like the girl who cried wolf.
Since I'm a chemo patient, the nurse listed me as a higher priority and gave me a mask to wear as a safety measure.
My parents and I sat down in waiting room...and waited. During the GBBF I was called to triage within three minutes. This time, without an active fever or a known infection, we had a longer wait.
I predicted I would have some tests, everything would look hunky dory, and I'd be home by early morning.
9:30 PM: Taken to a room. Dr. #1 listened to my story and gave me a quick exam, then explained that they treat chemo patients with fevers very seriously. He ordered a complete blood count (CBC), blood cultures, a urinalysis, and chest x-rays. The attending, Dr. #2 came by to confirm the tests I needed, plus informed me if my neutrophils were under 500 then I would have to stay, and between 500-1000 is a gray-zone area.
Nurse A placed IV in left arm. Blood drawn. Given 1 liter of IV fluids. Hello saline, my old friend.
11:00 PM: Informed that my WBC count is 0.9 and I need to be admitted. After talking about numbers in the hundreds, 0.9 seemed especially low. I conceded defeat and changed into a hospital gown. If this was anything like the GBBF, then I would be stuck in the hospital for several days.
After that, things got legit. With a weakened immune system, anything and everything was a threat to my life. To reduce germ exposure, I was instructed to wear a mask at all times (which I occasionally disobeyed because it was so stuffy). All docs, nurses, and personnel had to wear masks whenever they entered my room.
Two different IV antibiotics were ordered: Vancomycin and Cefepime. The nurse hooked me up to machines to measure my heart rate and blood pressure. I was given some blankets to keep me warm.
Then, the sliding glass door to my room was pulled shut.
|Hospital Adventure: Take Two|
Tuesday, November 4
12:15 AM: Sent parents home. They had work in the morning, and I didn't anticipate getting a bed for several hours. (Meanwhile, Fate laughed in the corner. Ha.Ha.Ha.)
Initial attempts to sleep were unsuccessful.
3:00 AM: Dr. #3 informed me that the Oncology/Hematology ward had no room available, so the Internal Medicine department would accept me...as soon as they had a bed available. He also congratulated me for finishing chemo. =)
Side note: Throughout his visit, I admired Dr. #3's hair. He had a buzz cut, thick and full and nothing like the Gollum sprigs currently growing on my noggin. I hope to have hair like his one day...
|December 2011, days after the charitable buzz cut. |
I can't wait until I my hair is this thick again!
|November 2014, note how excruciatingly thin my hair is, |
and the lack eyebrows and eyelashes.
Back to my story.
Lying alone in a room with nothing to do can lead the mind overthink everything. As I contemplated my predicament, I was not convinced 0.9 was as low as I initially thought. When Nurse A came to check my vitals, I asked what 0.9 really meant. He confirmed that those numbers should be multiplied by 1000. After doing the math I realized I had a 900 blood count, which is at the high end of the "gray zone" and super close to 1000, so did I really need to be admitted? (Yes, I did. I confused my total WBC count with my neutrophils-only count. Then again, nobody informed me that my neutrophils were 30 out of a minimum 500, which would have made my hospitalization feel more justified and less hellish.)
A moment of happiness in my dark dungeon: Nurse A taught me how to raise and lower the gurney backrest. I set the backrest aaalllll the way down flat so that I could maneuver onto my stomach to sleep. Ahhh! So happy! A smile twinkled across my face, which was hidden under a stupid mask. (Bye-bye mask.)
I'm a tummy sleeper. I can sleep on my side if I have to. Forget about sleeping on my back. As soon as I flip onto my tummy, I slip into blissful unconsciousness...
Even though it wasn't ideal and the IV in my arm was uncomfortable and patients in the other rooms were moaning in pain and a nurse was asking a new patient if he recently took crack...didn't matter. I was on my tummy and as content as one could be given the situation.
8:00 AM: Time for morning rounds! Attending doc and her four residents (including Dr. #3) came to examine me. My captors went to great lengths to keep their identities hidden by wearing overprotective gear: blue face masks, yellow paper aprons, and purple gloves. At the end of my interrogation, one of the residents (Dr. #4) informed me she would be my doc for the day, and another one (Dr. #5) offered a few words of sympathy. I don't remember exactly what she said, just that it was comforting, and I appreciated her extra effort.
9:00 AM: My potassium levels were low and I needed take a supplement. Bananas wouldn't count. After reviewing my options (3 hours of IV potassium, a giant horse-pill, or foul-tasting liquid supplement) I settled on the liquid, which I had once before during the GBBF. Nurse B said she could mix it with orange juice to mask the salty, metallic flavor.
|This is what happens when you combine |
regular schmegular orange juice with liquid potassium supplement.
It looks like a second grader's volcano experiment gone wrong.
It tastes like horrifically salty, artificially flavored orange soda.
Nurse B also gave me a heparin shot. In the stomach. Yeouch! Burned like a bee sting. Not as bad as a navel piercing, though. Pain diminished within a minute.
12:00 PM: Nurse C came to transfer me to a new room, and I was relieved because I had been waiting for so long...and disappointed because she moved me to a different ER room. Ugh! I went from being stuck in limbo to being stuck in a different place in limbo.
One benefit of moving: I no longer had to wear a mask unless I ventured outside to use the restroom. Everyone else who entered my room had to wear a mask, and my door had to remain closed.
12:30 PM: I felt a little peckish. I hadn't eaten anything since the night before and completely skipped breakfast (other than that fabulous potassium-orange "smoothie." Meh. I was too riddled with anxiety to eat breakfast anyway). We didn't know where my lunch was or if it was coming at all.
Nurse C was fabulous! She pulled some strings, got a voucher, and personally went down to the hospital cafeteria to get a turkey sandwich for me. As it was, with anxiety and irritation interfering with my normal hunger instincts, I only ate half the turkey sandwich and had a few sips of apple juice. When my lunch arrived thirty seconds later, I took one look at it and said, "Nope." Nurse C offered to refrigerate my sandwich for later.
The IV in my arm also started to leak, seemingly because one of the cap-screws near the puncture site had come loose. Nurse C adjusted the connection and voilà! All was better.
|I hate waiting. Waiting is stupid.|
Except, it wasn't. Major frustration set in. I hadn't been assigned a bed and I had no idea when or if it would happen. I couldn't stop thinking about being symptom free and my WBC count being so close to 1000. And I was bored. And lonely. And had no cell phone reception. And my texts weren't going through. And Internet was slow. And I really really really wanted to go home. And I wondered, "What's the worse that would happen if I put on my normal clothes and walked out of here? Probably wouldn't look too stellar on my patient record. Or to the insurance company. Might as well stay and wait this out."
3:00 PM: I asked Nurse D (there were a lot of shift changes while I was in the hospital) what it would take to be discharged at this point. I semi-joked, but was actually completely serious when I said, "I feel like at this rate I'll be discharged from the ER before I get admitted to a room upstairs." (Apparently this did not go over well. Later, Nurse F and Dr. #4 separately asked who told me I would get discharged from the ER and I told them no one, just my overactive imagination. I really hope no one got in trouble for my sleep-deprived, frustration-induced, misinformed assumption.)
Nurse D told me the doctor said I could leave upon two conditions: 1) I remain fever free for 24 hours, and 2) that the blood cultures develop no signs of infection. No mention of neutrophil counts needing to be higher. I started hoping the earliest I might leave was 11:00 PM, because the blood cultures had a minimum 24-72 hour incubation period, and apparently I had the mildest of mild fevers (99.something ºF) the night before. I was grateful to have a time to look forward to, totally understanding that things could change. I hate uncertain waiting periods.
Nurse D also attempted to give me another heparin shot. Wait. What? I already had one of those. I asked her what the purpose was (I've become better at being a proactive patient and inquiring what each med or treatment is for). Nurse D said heparin was given once every eight hours to prevent sedentary patients from getting blood clots, but as long as patients are mobile, they didn't need it. I asked if occasional walks to the bathroom counted as patient mobility or, if not, offered to do ten jumping jacks to avoid the heparin shot. She said walking to the bathroom was fine. From that moment on I refused every heparin shot a nurse dared suggest.
|Pointing to the bruise the heparin shot caused. |
Above my belly button, my "division sign" scar from the GBBF.
Next to that, a freckle.
4:00 PM: My IV started leaking again, this time from the vein. Nurse D pulled out the IV and we decided it would better to access my port.
Due to the ever-changing shifts, Nurse E came to access my port...which he failed. Twice. I've never had a nurse fail to access my port before, and now I know what that failure feels like: a sharp, rusty nail impaling the chest.
Another nurse finally accessed my port. First try. No pain (other than the mild prick of the Huber needle itself).
7:00 PM: Dinner arrived. Nope.
8:30 PM: Parents and sister Julie visited me. Omg! Relief! People! I missed people all day long!
10:00 PM: Ooh! Hunger! Finally. But my family ate my dinner (at my insistence). I requested the other half of my sandwich. Perfection.
11:00 PM: No lab results. No release. Family returned home. I requested meds to help me sleep.
Wednesday, November 5
3:30 AM: Nurse F had good news! (Yippee! Can I go home?) A bed was available and they were ready to transfer me. (Oh. Okay. That's better than being stuck in the ER.)
Finally, after THIRTY HOURS!!! in the ER, I was transferred upstairs to the Accelerated Access Unit.
The AAU is basically the Hufflepuff ward of the hospital; they accept everybody! They're also another limbo zone, a holding place for patients until beds become available in the specialty unit the patient should be in. For example, I should have been the Oncology/Hematology ward, and my next door neighbor should have been in the Orthopedic ward, and another patient should have been in the ICU.
One benefit of being neutropenic: I got my own room.
Internet and cell phone reception = excellent!
Same rules as before applied: I could be mask-free in my room, had to wear a mask if I ventured out. Hospital personnel needed masks while in my room. Visitors could be mask-free (or maybe they were supposed to wear a mask or I was. Oh well).
|Not pictured: next to my room was a cart full of masks, gloves, and paper aprons.|
8:00 AM: Daily visit from Dr. #4. She informed me my blood cultures showed no bacterial growth so far and my neutrophil count was at 70. This was the first time I learned how low my neutrophils were and it made me feel a whole lot better about being incarcerated. Yeah, 70 out of 500 is dangerously low.
Over the next few days, seven different nurses took care of me while I was in the AAU. All of them were super friendly and nice and low key.
2:00 PM: Sisters Julie and Christine visited me.
3:30 PM: I couldn't help wondering about my Thursday appointment with my oncologist. With my neutrophils so low, it was unlikely I would be discharged before my appointment. If it were a normal oncology visit, I wouldn't care. But this was my big post-chemo follow-up.
I asked Nurse G if I could arrange to keep my appointment because the Cancer Center is literally across the street from the hospital. I was willing to wear a biohazard suit if I had to. Nurse G recommended calling the Cancer Center for their opinion and promised to talk to my current docs. Cancer Center receptionist suggested I keep my appointment and consult my docs the next day.
5:30 PM: My oncologist is pure awesomeness. She stopped by after work to visit! Love her, love her, love her!
The most important question I had: Am I officially in remission?
I had not yet heard her use the word "remission," so I was hesitant to mention anything to friends and family and Facebook.
Her answer, "Yes, you are in remission." HURRAH!!!!
We chatted for a bit and decided to reschedule our appointment, since we'd have to meet anyway after my hospital adventure.
9:00 PM: My friend, Ryan visited me and we watched an episode of House, M.D.
Watching medical shows is weird after you've lived through the drama yourself.
Thursday, November 6
Neutrophil count: 320
Woot! That's over a 400% increase in 24 hours! At that rate, I expected to return home by Friday.
7:00 AM: During my daily doc visit, I asked if I could get a Neulasta injection to boost my WBCs. Dr. #4 said she'd look into it. Blood cultures still clear of infection.
11:00 AM: Julie and Aunt Debbie visited me.
1:00 PM: Michelle visited. Sneaked in a McDonald's chicken nugget Happy Meal for me. My docs had placed a restriction on my diet: low microbial only. Meh. McDonald's tastes better. Nurse G brought in my special low microbial lunch and caught us ketchup-handed. She was cool with it (phew!), especially since hospital lunch looked as appetizing as the other gruel they attempted to feed me. (I exaggerate. I mostly had no appetite for anything. Only ate one and a half chicken nuggets and five French fries.)
|Preparing to shower. Gotta keep my port dry.|
Nurse H thought I would enjoy the "biohazard" plastic bag.
She was right!
5:00 PM: Dr. #4 tells me instead of Neulasta, my oncologist recommends Neupogen. The two are similar, both boost WBC production. One difference is Neulasta is given once every two weeks and Neupogen is given daily. With my neutrophil count rising as quickly as it was, I decided to hold off on the injection.
8:00 PM: Spiked a 102.3 ºF fever. Weird. Except for feeling flush behind my ears, I felt no different. Nurse J gave me Tylenol to decrease the temp. Dr. ??? ordered more tests as a precaution. Round two of blood cultures, urinalysis, and chest x-rays.
Please, please, please, please, please don't let this prolong my hospitalization.
Friday, November 7
Neutrophil count: 414
Crap. Should have gone with the injection.
Nurse J was surprised I was disappointed the number increased. When the goal is 500, 414 is disappointing. With the previous night's fever spike, I was doomed to another day.
7:30 AM During my morning consultation, this time with Dr. #5 (the one who offered the kind words on Tuesday), I requested two things: 1) The Neupogen injection and 2) Could I have my complete blood counts (CBC) tested earlier? Although, it wouldn't have made a difference since the random fever reset the 24-hour timer.
9:00 AM: Upon admiring autumn's glorious colors from my fourth-floor window, alternate escape plans emerge...
If only I knew parkour and how to hot-wire a car. I spend the day writing in my journals and surfing the Internet for How-To articles.
5:00 PM: CBC test done early, as requested.
However, Dr. #5 said I would still have to stay overnight. Discharge wasn't until morning.
8:00 PM: Neupogen arrived. Nurse J injected me. Again in the stomach. Practically painless compared to the heparin shot.
9:00 PM: Neutrophil count (based on 5:00 PM test): 1200! Yay!
No fevers for 24 hours: Check!
No bacterial growth in blood cultures: Check!
Neutrophils above 500: Double check!
As long as I made it through the next twelve hours, I would most likely be free in the morning. No broken glass or parkour required. Fingers crossed!!!
Saturday, November 8
Neutrophil count: 8000!!!!!
Wow! My body really responded to that Neupogen.
9:00 AM: Attending doc, plus residents Dr. #4 and #5 came to announce the good news: I WAS FREE TO GO HOME!!!
10:00 AM: Given a final infusion of IV antibiotics.
11:30 AM: Parents arrived to pick me up and take me home!
For the next few days I will be on oral antibiotics. My docs are treating me as if I had pneumonia, just in case. Whatever. FREEDOM!!!!!
So that's my tale. Five days in the hospital with zero signs of infection, thank goodness. My docs' best guesses are that neutropenia caused the fevers and Bleomycin is responsible for the hazy lungs. At least it's not pneumonia. And best of all,