September 5, 2012 Extreme Family Reunion… Before Chemo Returns
OK….My brother arrived a few weeks ago from Dubai. My in-laws arrived with their spouse last week. One couple came from Austin, Texas on Friday evening and the other couple via Hawaii from Sydney, Australia on the previous Tuesday. Saturday we had breakfast at my mother-in-laws. We visited the Art Institute of Chicago for the Roy Lichtenstein exhibit. 
We saw the movie Hope Springs (which I’m happy to say that it didn’t portray our six-year marriage. we celebrate September 30). That night, we all descended on the poetry slam where I read my love poem to Scott.
Before the slam, we went to the Shedd Aquarium while I got a few things done at home and prepared for the Labor Day Brunch that we’d decided to throw for 15 people. Crazy, right? Take that, leukemia!
The brunch guests were all family and people who feel like family. They are aware of my diagnosis, so I took comfort in having a great excuse for embracing imperfection. One of the highlights was Veronica training Anthony and Alyssa in server skills to help take drink orders—complete with paper mustaches, bow ties and the obligatory towel draped across their arms. 
Our last meal together was snarfing down pizza at Giordanos. It was all awesome. With my background, it’s refreshing that siblings and in-laws are mature enough to get together without drama and dysfunction—even the kids. But I know the drama is the fun part, so I’ll go on to other topics.
Cancer Drama
Today, after my two-week hiatus, I was back in the Cancer Center at 9 a.m. for the beginning of the end. This time it’s the Daunorobicin and Atra with nausea medication. And of course, the PICC line, that 15-inch tubing that goes into my upper arm, through my veins and into my heart to dump the drugs. This is my fourth insertion, so I don’t know why my anxiety level was higher than ever? Maybe because it’s my fourth one and I’ve developed a love/hate relationship with it?
Picc a Vein, Any Vein
OK…the Picc line means you don’t have to be pricked every time they take something out or put something in your veins, but it is damn inconvenient too. I had to buy lightweight blouses for summer with longer sleeves to cover it. Then I started wearing short sleeves with a bandage. It seemed to me it’s better to look like you’ve got tennis elbow than chemo treatments. Then I started to not give a shit, at least around the house…which meant if someone rang the office bell, I felt I had to quickly install the wrap. Then there’s bathing. I have to put this rubber armband around my arm because the insertion point cannot get wet. Getting it wet is on the “Call your doctor immediately” section of the discharge instructions. This little ritual gets old fast.
Plus, the procedure is intimidating. You are clothed in a gown, and I don’t mean chiffon, and taken to a surgical room where four people stand in basically hazmat suits acquiring and sorting their collection of overpriced medical supplies. My arm is laid out perpendicular to my body for a straighter path to the heart. They wash it down with green stuff that makes me look like the Hulk’s cousin. They tell me to look away so I don’t breathe on the site and infect myself with my own germs. A physician’s assistant warns me that I’ll feel a “prick and burn, prick and burn, prick and burn” over and over as the numbing Lidocaine is injected. Meanwhile, I huge alien craft descends to three inches over my chest to reveal my inner workings on a screen the PA uses to feed the line through. I can’t help wondering if this equipment will be found to cause cancer in another five years. I want to go to my happy place. But this isn’t going to last much longer and I don’t want them thinking I’ve passed out. Bad form.
In a few more minutes, I’m down the hall for a blood draw. By the way, Scott is with me because we don’t know exactly how I’ll feel when I leave today. Besides, he’s good moral support. After my blood is declared healthy enough to pollute, I get IV anti-nausea drugs. Then comes the daunorubicin. It’s in a HUGE syringe that gets injected into the Picc line slower than our dripping bathroom faucet. It’s also red and makes you pee red after a few days. This could be alarming if you didn’t expect it. The session was followed by a weird pressure in my back on only the right side. The nurse took my vitals again and my blood pressure was a mean 183/109! At the beginning, everything was normal. So we waited a bit to see if this was a passing phenomena. It was. On to the pharmacy where I picked up one week of Atra meds for $1800. Geez. Luckily, Blue Cross is my friend, right now.
Kudos to Effleukemia
On a more positive note. One of my fellow cancer comrades/fellow bloggers, who also cycles just scored a column for Cycling Illustrated’s online mag. That’s cooler, but even cooler is that he inspired me to do something similar. I’ve got the cancer card. I write and paint. What the hell! I need to leverage my diagnosis. It has to be good for something! So I spent some time googling sources. I didn’t find much, but I didn’t get that far because I was kind of pooped from treatment. If anyone has any ideas, let me know.
My friend Karen arrived from NYC on her way to Hawaii as well and stayed with her sister in the remote burbs. Hopefully, we will get a chance to catch up. In Florida, Kathy is patiently waiting for a window to open so she can visit.
In Emily's Head 
Ah, yes- ATRA and the ‘red stuff’ (daunorubicin). I remember well. I was on ATRA for a year. If I didn’t have the Medicare pharmacy plan, it would have been $120 K (from the place I was dealing with) for the year after the arsenic. I was lucky with the red stuff; Ara-C was my nightmare. Got to love that ‘miracle mouthwash’ stuff. Should be a leukemia food group. PICCs are +/-…. I went 6 weeks without a shower due to the PICC and neutropenia. Used those little washcloth packs. I’m surprised there wasn’t a green fog coming from the room.
I’m glad you had time with your family before starting this process. (and whoo hoo to the folks from Austin- lived there before it was a cool place). I’m in the Greater Chicagoland area myself. I’m rambling- sorry
Anyway- I’m hoping this goes as well as possible. 🙂
jillinois
September 7, 2012
Thanks for the comments. Six weeks without a shower! Wow! I have a rubber arm thingy to take a shower with. Where about are you in Chicago area?
emilyshead
September 7, 2012
Rockford area.
My ANC was so low that I couldn’t take the chance with the arm thingy. I already had an ear infection, cellulitis, and was on Gent and Vanc for about 5 weeks. But the PICC was the only option before I was doing well enough for a Hickman. Had that for a little over a year.
jillinois
September 7, 2012
Wow, thanks for the shout out! 🙂
Quick question though – how come they keep putting in / taking out the PICC line? I’ve had mine since June 7th. They said it can stay in your arm for up to a year, assuming there are no complications.
Also, to shower, I’ve found that you can take a ziplock sandwich bag, poke a hole in the bottom, widen it a little bit with a pair of scissors, and then use medical tape to tape the whole thing to your arm. You still have to kind of avoid getting that arm wet, but it’s been better than anything else I’ve found.
What is this rubber contraption you speak of? Is it easy to use? Where did you get it? Details! 🙂
Eff Leukemia
September 12, 2012
The Picc Line choice is mine. I wanted to hit the beach between chemo hits, so I asked them to take it out and reinstall it. I had the zip lock bags thing in the hospital. They worked OK, but it was difficult to do by myself. Here’s the thingy my daughters found: http://www.qualitymedicalinc.com/crutch_cast_accessories.htm
PICC Line Protector Dry Pro PICC Line Protectors
The Dry Pro™ uses our same vacuum seal over your PICC or IV line, but is tan colored and open on both ends to keep your hands free for use. You can shower, bath, swim with a PICC line, with complete waterproof protection. To size the Dry Pro™ for PICC lines, measure the circumference of the forearm and the bicep. The protector can be trimmed to fit anyone, just make sure that your measurements are within the range below.
As with all Dry Pro(TM) products, the PICC line allows the patient to go swimming, bathe, shower and receive hydrotherapy. Dry Pro(TM) protects a cast, bandage, or IV during any water activity.
It works pretty well. I wouldn’t swim with it, but for showering, it’s fine.
Emily Calvo
September 12, 2012
Awesome! Thanks, that’s just what I was looking for. I’ve surprised myself with my one armed dexterity, though. I’ve managed to wrap my PICC by myself for most of this process.
That’s mostly because I insisted they put the PICC in my left arm. They wanted to use my right, and I pretty promptly said “Nope. Not happening.”
Gotta take a stand for what we believe in, right? Haha
Eff Leukemia
September 12, 2012