Saturday, September 22, 2012 Jupiter is in Crabby
Whenever anything occurs to a several individuals over a period of time for no apparent reason, I blame the planets. This past week held lots of great events, but for some reason, I’ve been crabby. Not abusively awful, just grumbly crabby. So here a quick recap of the good, the bad and the ugly.
Sunday was fun. We had a wonderful lunch with friends and saw the play Equivocation at the Victory Gardens theater. I also met a group of poets from Paris at the Green Mill. They were wonderful and I read a couple of poems I wrote when I was in France. Very cool. Apparently not cool enough because on Monday, I still woke up crabby.
I had a blood test at 9 am, which is reason enough to be crabby, but I didn’t need a transfusion! Very good. Apparently not good enough because I was still crabby. My brother left for Dubai, so I got my studio back, which was good, but I haven’t had too much time to use it, so crabby strike two. In the evening I had a great conversation with my grandson. I told him he wouldn’t have been in school if he lived in Chicago because of a teacher’s strike. That inspired an explanation of strikes, unions and contracts. That inspired him to write a contract for his mom to sign agreeing she would not watch inappropriate TV shows when he’s around. That afternoon I got a call from the hospital saying my blood test showed my immune system was out to lunch, so I needed to pick a prescription for Cipro, a powerful antibiotic reserved for treating anthrax. Scott picked it up and I started taking it the next morning.
Fatigue has set in big time. I’ve even taken naps. I never take naps. Until now, I’ve been physically incapable of naps. Plus, I’ve been waiting on pins and needles for my hair to fall out again due to my chemo a couple weeks ago. I’ve been getting awesome compliments on my hair and I’ve been sad that I’m going to lose what little I’ve acquired. Blah.
On Tuesday, Scott and I met friends for dinner before going to the show at the Raven Theater that included the French poets from Sunday night. The performance was great…and sponsored by Chicago Slam Works, which I co-founded a few years back. It made me feel good about my involvement, but apparently not good enough because I was STILL crabby.
Wednesday I was tired, but I made it to art class. I’m working on a large field of sunflowers facing the horizon which means yellow, green, yellow, green, yellow, green, yellow, green…which is why I’m not a realist painter. BORING. I’m almost done though.
Thursday, I was back for blood work. I still didn’t need a transfusion, but I got the germ lecture about hand washing and staying out of crowds due to my faulty immune system. Funny, by Saturday I saw three plays filled with germs. And I’m still breathing. The appointment also included a new plan. I will start another three-day cycle of chemo on Wednesday, October 3. It’s always nice to have things to look forward to. (She says sarcastically.) I also managed to take a long walk by the lake with Marlene.
Friday…tada. My hair started falling out. The big chunks didn’t start till today, but it’s definitely going. Get out the scarves again. Urgh. HOWEVER, last night I saw my third performance of the week. Maybe I’m just tired of doing stuff???? That didn’t stop me for seeing another performance. A friend was in The Spew, a parody of the program The View. My friend Jane drove and we met up with Veronica. That’s when Jane confessed that she’s been crabby too. That’s why I’m blaming the planets. The show was really fun. I was even dragged to the stage to be interviewed by Barbara WaWa and managed to not make a fool of myself. Fun! Great performance!
Today, Christy and Tony invited us and Penny for brunch. It was great. They even hauled a trampoline a neighbor gave them into the backyard. Of course I had to try it. Of course I was out of breath in five minutes, but hey, I jumped on a trampoline! I try to forever be in touch with the four-year old within.
Now that I’m writing this, I’m thinking maybe I’ve kept myself busy so I could be in distracted from all the medical stuff. Maybe I just need to be miserable for a bit and let myself work through it. Maybe I need to just be nice to myself like I was last Saturday when I spent the day with myself. I shopped for a sofa, took myself out for crepes for lunch and bought some jewelry parts. Yes, I’m a great date. Maybe i need to feel the gratitude for a week filled with good stuff.
I asked Scott if he complained about my crabbiness to his friends. He said, “No. No one would believe me.” Believe him. I can be crabby.
Read Full Post | Make a Comment ( 1 so far )Monday, September 10, 2012 Take a hit of chemo…
Last week, I was doing pretty well. This week is starting out rocky. The three doses of chemo I had at the end of last week hit me yesterday, so I’ve spent a lot of time in a horizontal position…and not in a good way! I couldn’t even crawl to the Mill last night. I was also a little nauseous, but a pill took it away.
This week, I’m off from treatment, but I need to go in on Wednesday for blood levels. If things are down, I might need a transfusion. We’ll see. When the numbers are up again, they’ll give me three more doses (in two to four weeks). Rinse and repeat. Then, only meds for a year. Not sure how what those will do, or if I’ll get used to them over time.
The Intouchables
I didn’t see the Stand Up 2 Cancer show that was broadcast on all networks last week. While it would be great to figure out a cure, there’s so much money in treatment, I’m not optimistic. OK…yes, I’m a jaded old lady. And, because there are so many types of cancers, it seems unlikely that there’s a silver bullet.
Since I have enough of cancer in my life, we went to see “The Intouchables,” a French film about a zillionaire who hires a street kid to take care of him. It was GREAT! True story too. Saturday, we went to my mother-in-laws for the movie, “The Hunger Games.” Very intense, but interesting and unapologetically a commentary about the 1 percent.
Take the Floor
For a long time, there has been a beige-ish carpet in our dining room and living room. Today, Scott had a carpet guy come over and pull up our nasty carpet in the dining room. This means, he did a lot of furniture moving. The carpet is old and underneath is beautiful terrazzo marble, so I suggested we just pull it up and maybe go for an area rug or runner if it ends up being cold in there. The problem is, now we have to find someone to touch up and polish the marble, but it looks better already. I think it just might be one of those things that we ask ourselves why we waited so long.
Cheers to Scott
I’ve been meaning to dedicate some time to giving my awesome husband huge kudos for being so incredibly 
supportive through all this. He’s been a rock. He’s been there for me every step of the way. He’s always listening for ways to make my wishes come true. Hence, the floor. But that’s just one thing. There have been gobs of other things. From flushing my Picc lines to nagging me about my meds or making lists of questions for the docs or doing laundry…Scott, thanks. I love you.
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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.
Read Full Post | Make a Comment ( 6 so far )Tuesday, August 12 2012
Last night, I had dinner with L. Every time we meet for dinner, which is only a few times a year, we close the restaurant. Yesterday was no exception. We start like old ladies trading symptoms and wind up trading hysterical scenarios.
I’ve been concerned about how to visit my mom who is in a nursing home in Eau Claire, Wisconsin. I am her legal guardian because she dementia. She still knows who I am, but she sometimes thinks my children are small or that her brothers are still alive. Sometimes I wonder if people who aren’t “all here” are simply somewhere else. She claims my dad visits her now and then.
As her guardian, I try to check in on her at least once a year, but this year is different. Not only have I had non-stop treatments, I think she would see my peach-fuzz hair and know the deal, which I have successfully kept from her. After all, she has dementia, not stupidity.
I was expressing my reservations to L who suggested telling her that Scott shaved my head in my sleep for a joke. I could draw a handlebar mustache on my face with a marker for extra believability. Funny, but probably not the way to go. Which is worse: Having my confused mother learning I have cancer or have her thinking I’m married to an immature dork who has the maturity level of a frat boy?
Read Full Post | Make a Comment ( 1 so far )Monday, August 11, 2012 20 Days Down/5 to Go
I’m seeing the light at the end of the tunnel. Only five more days of IV arsenic. I was apprehensive about my EKG being off because of what happened last Monday, but all the numbers came back within range. We had to wait FOREVER for the EKG and blood work results to come in. I’ve been here for 3 hours and still don’t have the bag o’ arsenic. I think the wait times test one’s pain threshold more than the treatment!
I had a great time at the Poetry Slam last night. There was a priceless moment when I was entering the Mill. A car came to screeching halt at a red light. Everyone on the four corners turned to look only to see the police officer, in the police car that was stopped at the neighboring light, reach out his hands to applaud the driver. The audience on the corners laughed out loud. Some applauded as well. It was hilarious, but maybe you had to be there.
I have to get back to reading at the Mill. I don’t know why I’m so consistent for awhile and then fade away. Last night, I was tired after Scott and I took a 2+ mile walk.
Saturday, I enjoyed hanging out with the kids. Christy and Tony put out their great breakfast buffet
Scott stayed home to load up the garage sale with stuff and it’s gone now. Yay! The Stuff is seriously thinning out around here. Now it’s a matter of getting it organized.
Friday’s treatment was a no biggie. I didn’t feel quite as wiped out—maybe because I ended the week short two treatments. When I got home, I had a great talk with a cancer comrade. We were talking about how people who have cancer can discuss ALL the “what ifs” with a practical attitude, while the rest of the world thinks you’re being morose. Trust me, when thinking the “unthinkable” we are merely exploring all possibilities, so we can plan accordingly. We are not wallowing or looking for attention. Cancer is the perfect disease for control-freak planners. Heart attacks are not. Cancer allows for a graceful exit…not that we’re looking to exit. We just want to know where the exit door is in case of fire.
Read Full Post | Make a Comment ( 2 so far )Thursday, August 2, 2012: Maintaining Coolness
After treatment on Tuesday, I caffeined up for an afternoon of actual work. As usual, I was energized by evening, so Scott and I went for a walk for well over my minimum mile. I even got the urge to sprint a half block before pooping out.
Yesterday, my friend Maria picked me up and kept me company during treatment. It went so FAST! Our conversation truly made it feel as if I’d been there a fraction of the time.
Nurse A has taken care of me for several days in a row. She is very attentive and professional, but looks as if she’s just celebrated her sweet 16 birthday. In trading weekend plans, Nurse A said she was excited to have Lallapalooza tickets and asked if we knew what it was. Maria and I traded glances amused that we were perceived as “old people.” Not that we aren’t…or at least I’ll admit to it. We reassured Nurse A that we knew all about Lallapalooza and asked who was playing. We could see Nurse A run through the list of bands in her head searching for the old-school names we might recognize. Red Hot Chili Peppers and Black Sabbath came to mind. I did not mention that about 10 years ago I was on the board of an organization that invited Billy Corrigan, of Red Hot Chili Peppers, to read his poetry at the Art Institute and I was happy he’d gone back to music—although I did have the urge to establish our “coolness.”
Afterwards, Maria had a yen for breakfast ,so at Nurse A’s suggestion, we drove over to the Original Pancake House on Green Bay Road. I had the spinach crepes, which were great. After that, I was ready to crash, so I took a nap when I returned home. I needed to be recharged to get to my art class later that evening.
I was pleased to bring my finished Letter to Picasso painting and then identified one more little spot to tweak. I also started another “poem painting” based on the idea that being a parent is like being a potter. Stay tuned for the JPG. As usual, the class is as social as instructional and relaxing.
Meanwhile, Scott was a Veronica’s place installing a Magic Jack phone he found for her birthday. For dirt cheap, she can use her Internet service for unlimited local and nationwide long distance. She’s been using her iPhone, but she lives in a reception vortex, so too often Veronica sits on her stoop to make calls…not fun in the winter.
Today, I’m back in the merry-go-round room. This morning’s blood work came back good, which allowed us to order up the arsenic drip. I wonder if there’s a drug to maintain one’s cool factor?
Let’s see what else I can get done here in the next few hours.
Read Full Post | Make a Comment ( 2 so far )Monday, July 30, 2012 Birthday Cake & Arsenic
I had a great weekend! First of all, the weather was fabulous. It made it easy to get my errands done. On Sunday, we hosted Christy and Veronica for their July birthdays. We’ve made it an annual event and I was determined to pace myself so I didn’t get too tired.
Saturday morning, Scott and I started by hitting the grocery store for the menu items. We decided to grill chicken. We picked up some salads, cake and other goodies. Since I didn’t have treatment, I was feeling almost normal.
I spent the afternoon wrapping presents and making cards. It was nice to be able to put a little extra effort into it. I also finished the text in my “Letter to Picasso” painting (actual poem is at http://emilycalvo.com/wp-content/uploads/2011/10/Poems-about-Art-_1_.pdf )
Night at the Movies
By Saturday evening, it was time to chill, so we went to On Demand for a movie. I missed the film Being Flynn when it was out and I’ve really wanted to see it. It’s based on a book titled, Another Bullshit Night in Suck City. I’ve met the author, Nick Flynn, at several AWP conferences. The last time, he claimed to remember me.
His book is a memoir about his relationship with his father who was an absent father, but showed up for a bed when Nick worked in a homeless shelter. It’s a beautifully written ugly story that portrays the complexities of life with poetic language. It brings up questions everyone faces at one time or another: How much should we give to a family member? How much should we feel responsible for the actions of others. I was curious to see how the story would avoid being majorly depressing once the text was adapted. I have my own “dad book” in the works, so I wanted to see how adaptation was handled. I was pleasantly surprised. The screenplay held the mood of the book and stuck to the story without being morose. Plus, De Niro brilliantly played the father. You should see it!
Party On
On Sunday, Scott and I got the patio in shape for the party. It wasn’t horribly hot outside, so that was promising. Christy and Tony, the grandkids, Veronica, my daughter’s dad, and Scott’s mother all arrived around three. We BBQ’d chicken and did the usual birthday cake, etc. When Anthony, my 9-year old grandson, saw Scott with his flip video in hand, he insisted on being the announcer. There were to be four parts to the party: Meet and greet; dinner, presents and good-byes. He would introduce each section. Being the announcer comes easily to Anthony. When we were on the patio we discussed his ability to court the camera.
“I just like to think of funny things to say,” he told me. “My teacher says I can make anything funny…and I think she’s right.”
“You’re good at it,” I said. “I can get up in front of people, but I’m not quick on the stage. I need to think of things first and then get in front of people.”
He responds, “Well you go and read poetry and I don’t know how you do that.”
“I can do that because I know what I’m going to say.”
He paused considering the difference. “My mom was reading something about how to be funny. I think that’s silly. You can’t get humor out of a book. It has to come from your heart!” He says this as he places his hand over his chest in earnest.” I laugh.
He is pleased to make me laugh. 
Show me another 9-year old like this???? Of course, his sister Alyssa 
also has a great sense of humor. Do they get it from their mom?
Everyone had a great time. No food was injured in the making of this party and I was still standing.
IV Arsenic: Week 3
Two down, three weeks to go. Today, I was back in treatment and our friend Pam B. who offered to come to the hospital with lunch. She arrived with a three-course meal and we enjoyed talking for the duration. When I got home, I slept almost the entire afternoon. I can see that having any energy is getting more difficult. Damn.
Scott had to take his care in for repairs because it made some uncomfortable noises and vibrations. I called a cancer buddy. In the past, I offered to connect with a cancer comrade through an organization that matches patients with others who have undergone similar experiences. Lorraine is a delightful woman in New York State. We spoke for over an hour and realized we have a lot in common. No doubt we will talk again.
By dinner time, I got a second wind and heated up some leftovers from the BBQ. The laundry was also piling up. Scott noticed that we hadn’t leveled the new washer, so we unhooked the tubes, moved it from the wall and tried our best to even up the sides. With that accomplished, we loaded the machine, turned it on and realized we’d forgotten to reconnect the water tubing when water flooded out of the back and flowed across our uneven floor toward the kitchen. Our sweet little machine adjustments turned into an hour of cleanup.
I went for a walk before going to bed. After all, I have a 9 a.m. treatment tomorrow.
Read Full Post | Make a Comment ( 3 so far )Thursday, July 26, 2012 Drip, drip, drip…
Happy Birthday to my awesome daughter, Christy. You only get more beautiful!
We will be celebrating both daughters’ birthdays on Sunday. Hopefully the patio will be inhabitable.
Today, I am getting dripped. We had a meeting with Dr. G and his assistant. I feel like I finally have a clearer picture of how things will progress. I have three weeks more of the arsenic. Then I am scheduled for another bone arrow biopsy on August 23. A couple weeks after that I will get chemo pills: 7 pills of Atra and 3 days of daunorubicin; two, one-week cycles with two to four weeks in between. Atra is a pill, but daunorbicin is an IV drug so i’ll have to come into the hospital for that one. But wait there’s more! Then there’s one year of oral chemo that includes: atra, methotrexate, and mercaptopurine. Looks like I’ll be into scarves for some time. Confused? Ugh.
I miss my hair. I was the one physical feature that never gave me problems.
After the treatment I came home and rested for most of the afternoon. Then a second wind came my way after dinner, so I decided to have some girl time with myself and go to Old Orchard for a couple of birthday presents. I also had to exchange some makeup at Macys. That place is so unimpressive. It’s almost like the Gap–great if you want some classic solid color item that, while decently made, looks like everyone else. I was in a mindset to treat myself, but I couldn’t find anything worth having. Plus, I have enough stuff right now.
I’ve gained about 10 pounds throughout the treatment. It seems my stomach feels better when something is in it. I’m being more disciplined about what I’m eating even though the doctors tell me, “This is no time to diet.” But this is no time to become more “plus size” than I am.
Unlike me, Scott has turned up his nose at cookies and ice cream on a regular basis. Consequently he’s lost about 20 pounds. He’s taking daily walks too. He’s going to be all svelte and I’ll look 10 years older, so I better get on it.
On the bright side, I got motivated to exercise yesterday. One of my blogging cancer comrades posted a motivational post regarding his own lack of exercise and made a commitment to get back into it. I’ve been taking walks here and there, but the weather has been so awful, it’s been hard to keep that up. Instead, I’m dusting off the exercise bike and vowing to get back on it. Meanwhile, I am gearing up with walks of at least a mile.
I also took care of some of my mother’s business. I am her legal guardian. She has some dementia, so she is in a home in Eau Claire. Wisconsin. The upside:She is in better spirits than she’s been for most of her un-dementia life. However the occasional paperwork and check-ins with the state can be a pain. Today, i called the person referenced in the letter, who told me to call the person who wrote the letter.
On Friday, Christy and the children will keep me company during my drips. They even pick me up and take me home which means they are stuck at the hospital for the duration.
They are heroes for their patience.
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In Emily's Head 