I'm Back

My little feet are exhausted and I'll tell you why!
1. I've been running.
Your eyes are not deceiving you! I finished up my three-week round of IV antibiotics on Monday, and my home care nurse came that day to deaccess my port (this means she removed the needle, but the port itself will remain under my skin for the next time I get sick). Later that night, I went on my first run since the winter. I won't lie and say I went very fast, but I did go far - 40 minutes worth of jogging/walking! My lungs were hurting, as were my legs, but at one point during an inspirational song I honestly almost cried out of happiness. Kinda lame, I know, but I just felt so proud of myself. It's been scary to see my health decline over the past year, so choosing to fight for my life has renewed my sense of purpose in the world. I've gone on two runs since the first, and I think they're already starting to get easier.

2. Class is back in session.
I haven't stopped taking classes since I first moved to Ann Arbor in the fall. Although the spring term ended two weeks ago, I had to take two "Incompletes" and I am still making up assignments. But I think Zoloft (my anxiety drug) has started to work, because I haven't yet had any panic attacks about catching up; fingers crossed that it stays that way! Summer term started last week, and I'm really happy about my decision to drop one of the classes I was going to take. Just having my Introduction to Literature class on Tuesdays and Thursdays is giving me a lot of time to do extra treatments and rest, so hopefully my lungs will get back to where they need to be within the next few months.

3. I went back to work.
Tonight was my first shift back at the coffee shop since I got sick, and I was ridiculously nervous to close by myself. I was only on my second week of the job when I had to go to the hospital, so I was unsure about my ability to remember all of the drinks. It ended up going really smoothly, and I found a little surprise in the tip jar at the end of the night. :)

My lungs have been pretty junky, these post-IV days . . . I'm having trouble going to sleep and staying asleep because I'm coughing more than I usually do. Additionally, I'm waking up super early with tons of thick mucus and chest pains, which isn't the most fun. I had a clinic appointment yesterday which my mom was able to come up for, and my lung functions weren't what I wanted them to be: only 63%. That number was a bit disheartening to see after JUST having gotten out of the hospital, but it just goes to show how sick I was in the first place. I feel really dumb for waiting so long to get treatment, but it was an awful time for me to be sick and I was hoping to just get over it. Unfortunately I set myself back pretty far, so it'll take a while to regain that lung function. But that's just even more motivation for me to stick with my running! I love this life and I want more of it.

Dr. Simon said that I can start taking Orkambi! He estimated that it will take 6-8 weeks for insurance companies to figure out how much of it they're going to cover, which better be 100%, because the drug costs $250,000 a year. I can't wait for pharmacies to start stocking it so I can see if it does my lungs any good.

Here's my most recent vlog - my mom and I took the camera to the CF clinic. Subscribe, if you'd like!

Sixty-Five Roses

            I didn’t know that was going to be the last day. I swear I didn’t know. If I had known, I would’ve baked oatmeal raisin cookies instead of buying chocolate chip. I would’ve worn the earrings she liked—the ones that looked like little turtles. I would’ve brought a game she actually enjoyed playing. But I didn’t know, and I didn’t bake or wear or bring, and that was the day Rose died.

***

            “Took you long enough!” she yelled. I rubbed my hands with sanitizer upon entering room 223, trying not smirk at the way her voice cracked when she was irritated. Florescent overhead lighting mimicked noon in the worst possible way.

            “Oh, be quiet. It’s eight in the morning, you brat.”  A shiver seized the hair on the back of my neck as I adjusted the thermostat. There was no point in asking if she wanted a blanket—she didn’t. My eyes brushed her bones, knowing that drum-tight, moon-colored skin was the normality of her condition. Her blue lips fused into a firm line as she adjusted her oxygen cannula, then her floppy sunhat, which she insisted on wearing year-round.

“What’d you bring me?” she asked.

"I'll tell you what I should've brought you—nothing.” Rose laughed in reaction, mucus bubbling in the back of her throat. “Hey, can you even see with that thing on?”

            "Obviously. Not that there’s much to see here, anyway," she said. And she was right. With rounded furniture in varying shades of gray and a third story view of sidewalk cracks and bus station smokers, blindness seemed like a tumor worth trading for. Out came the cookies and the deck of cards.

            "Seriously? We played Uno yesterday," Rose said, not at all trying to conceal her disappointment. I constantly eyed the growing dullness of her corn stalk hair and wondered whether she was actually swallowing the pills I placed next to her milk. But when it came to what she was feeling, there was no guesswork involved. Methodically, I took off my coat, tossed it onto the empty recliner, and sat at the foot of the bed.

            "Well, Uno is a classic. And the classics are classics for a reason,” I replied, shuffling.

            “That’s what my dad says about his music.” I paused for a moment to watch her. Her freckles hid in response to January snow, clashing with the perennial power of her eyes. Her port dressing was coming loose, barely visible above the neckline of her t-shirt.

            “When was the last time you talked to your dad, Rose?” Now it was her turn to pause.

            “Last night.”

            “And what did he say?”

            “Nothing. Just the usual stuff.” She was growing more and more annoyed, her gaze refusing to set from my fingers and the cards.

            “Is he coming to see you, soon?”

            “Deb, does it matter?” Her eyebrows blew together and furrowed. “He’s too busy with work. Besides, you’re way more fun. And you’re a nurse. If I was dying, you would know how to save me.” She pushed her bangs behind her ears and I could see tiny dewdrops shimmering on her forehead.

            “Why would you say something like that?” I asked.

            “Because it’s true.” A cough rattled from within her ribs, proof that disease had rooted itself in a place neither of us could reach.

            “Here—we’ll start with more cards this time. It’s harder, but it’s also more fun.” Rose’s nostrils flared as I passed her seven Uno cards and straightened the deck between us. She froze, staring at her purpling fingernails.

            “You won’t stop coming, will you, Deb?”
            “Well, considering how often you tease me, I should.” I dug a finger into her side and a single, scratchy laugh was uprooted from behind her teeth. “But, no. I’ll always come. Life would be far too boring without you.”

            “Ugh. Stop mushing out on me and play.” She picked up a chocolate chip cookie, bit into it, and grimaced. “You know,” she said, chewing, “these taste like shit.”

***

            I often look back on that day and consider the things I could’ve done to give myself more time with her. I ask myself if the meticulous lip-liner was worth it—if my sedan really needed to be washed. They called it “Rose’s Celebration of Life,” but that’s not at all what it was. Or at least that’s not what it turned out to be. I withdrew into my skin, safe and unchanged, and peeked: thirty people in a dim room they could barely afford, listening to a man preach about a god they didn’t believe in, weeping over the loss of a girl they never paid attention to.

Summer Admission

Well, guess where I am.

Yup, Bronson Methodist Hospital. I got here Monday after my clinic appointment. My numbers had gone up to 57%, which isn't THAT much lower than my baseline, but Dr. Marks said that after a week of such potent antibiotics, they should've been higher. I also lost two additional pounds after focusing all week on eating a lot of high calorie foods. My dad had dropped me off at the clinic and went to take care of something for a friend, and he said he would definitely make it back in time. He didn't, actually. I had to stall like 20 minutes, and he wasn't happy to find out I was being admitted...but one I explained to him that my choices are either to do it now before school or just get admitted in a month and stay here for double the time, he seemed to relax into a more positive mindset.

So my dad drove me to the hospital, walked me up to my room, and then had to head back for work. Luckily I'm 18 now, and can sign my own papers and check myself in. I got a chest x-ray because Dr. Marks suspected pneumonia, but the results turned out to be pretty much the same as my last chest x-ray. Which was very good news to hear(: I then got an IV, and that hurt, like it always does. I don't have a phobia of needles or anything...that'd be silly, at this point in my life. But I have bad veins in my hands and wrists that like to roll and hide from nurses, and of course, no one ever believes me. It took a while, but after exclaiming "I hate your veins!" she finally got it.

Yesterday I got my PICC line, and I was so happy to get that IV out. PICC lines are so much more comfortable. I recorded a few different video clips of the process, and I'm hoping to put them together into a video for my YouTube channel.

My blood sugar was also a bit off, so I had to get a glucose tolerance test today. I started my fast at midnight last night, and had to chug that disgusting drink at eight this morning. My blood was drawn at 10:20, so we'll find out tonight the results...this has happened two or three times before, so I'm not too nervous. But I guess it's still a bit scary, knowing that this test is for Cystic Fibrosis Related Diabetes, or CFRD, and 20% of people contract it because their pancreas is blocked by the mucus.

Also, my friends Anna and Brandi visited me bright and early today, right while I was chugging the drink! Haha. Yesterday was Anna's 18th birthday, and I was supposed to go to her birthday/going away party. :( She stopped by on the way to UofM, and Brandi's helping her move in her things right now...it's so sad. They've been my best friends at dance for as long as I can remember.

Whew! I know this has been long. A lot more happens at the hospital than it does at home, that's for sure. Dr. Marks asked me today if I thought it was time to get a port...that kind of took me by surprise. Lots to think about. He says I'll be staying here for at least a few more days, so I have no idea if that means two or ten. We'll just have to see.