Thursday, August 22, 2012 Coming and Going

Posted on August 24, 2012. Filed under: Cancer, Family, Just fun! | Tags: , , , |

Pam and Tom

What a whirlwind! On Friday, my long-time friend from third gradecame into town from California with her husband. We ventured to the Persian restaurant and then kidnapped them for a tour of Chicago. Scott even drove to the Museum Campus for a first-class view of the skyline. It was a great time. Pam and her husband are in town to meet their new grandson, a hardy 10-pounder, so we were happy to have had an evening with them!

For me, it was as much a celebration of the end of my five weeks of treatment. They removed the picc line again. I’ll get it back in two weeks though.

On Saturday, Diane cancelled her soiree due to not feeling well, so Scott and I went to a little art fair in Rogers Park. The weather has been great. I was tired but the show was so small, it didn’t tax my energy at all. That night, we went to see Moonrise Kingdom. It was wonderfully quirky and fresh.

Sunday called for going to the poetry slam and I actually got up and read for a change. My brother went too and I think that was the first time he saw me read. I need new poems. I have so many unfinished pieces and three “cancer” poems, but I have to be in the right mood for those.


Then on Monday, I had another reunion. My friend Colleen was in town from the East coast. I also picked up my car and managed to get some groceries. On Tuesday, we celebrated by brother’s birthday with pizzas. Christy and the kids came over as did a couple of my brother’s friends.

They Want a Piece of Me
I started the week with no doc appointments, but yesterday I had another bone marrow biopsy. We’re looking for no leukemia cells on this one, but I won’t know the results until Friday. I had to remind Dr. G’s nurse that I wanted mega morphine. Last time, I received three milligrams but it didn’t really help. They told me I could have five this time—and that’s what I got. It helped, but I could still feel the metal carving into my pelvic bone. It sounds like metal on a cement sidewalk, but it’s as if I’m hearing it from the inside out. It’s weird. The doc actually spent a little more time rummaging around in there. He probably wants to get as much bone as possible to look at. Fine with me, but can we go for seven milligrams then? The rest of the day, I made friends with my pillow and watched stupid TV shows. I also connected with another cancer comrade.

Emily’s Head

No matter what results show up, Dr. G is moving forward as planned. This includes my two weeks off until September 5 when I return for another Picc Line insertion and then three days of the IV chemo drug, Daunorubicin which can cause: nausea; vomiting; sores in the mouth and throat; diarrhea; stomach pain; hair loss; red urine; and other cancers. Whoopee.

I had this drug in the hospital and experienced these symptoms, except mouth sores and stomach pain. They give you a nasty mouth wash to prevent mouth sores. Time will tell if it will spark another cancer episode. It’s nice that I was warned about peeing red. That would have freaked me out. I was given drugs for the nausea, so the worst I felt was a bad hangover. The sad part is that I will have to say good-bye to my hair again—and it’s been coming back so nicely, albeit gray. With the right earrings I won’t even look gay…not that there’s anything wrong with that.

Meanwhile, my mother-in-law was admitted to the hospital. We expect her to be released in a few days when the diuretics kick in. She’s a sharp woman who is looking forward to her three kids being in the same city next week, so hopefully, all will be well.

On the bright side, I did some research this afternoon, for places to send my writing. I’ve got a manuscript of poems, a couple of articles and a book in the works. Now I’m tired.

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Tuesday, July 3, 2012

Posted on July 4, 2012. Filed under: Cancer | Tags: , , |

Tuesday, July 3, 2012

I’ve been a bad blogger…no posts for a week! I must be having fun.

Last week, my excuse was that I was super tired. I was on my fifth and final week in the first set of treatments. Every afternoon I came home more tired than the previous day. There was nothing much more to write about. You would have been bored out of your mind. Sick of hearing me complain too.

Now, I’m enjoying two weeks without treatment. I also had the picc Imageline removed from my arm on Friday. It’s a little over a foot long, so my granddaughter, who is fearless, couldn’t help looking and her eyes got bigger and bigger as more of the line was gently pulled out by the nurse. My grandson didn’t look. Of course, they’ll put in a new one on my first day back. Meanwhile, I am wearing short sleeves and savoring no alarm clock.

Over the weekend, we met the grandkids and my daughter at a movie theater and saw Brave together. It was one of the better animated films I’ve seen. For starters, it’s beautiful. The landscapes are crafted with richness and authenticity. The characters are also well done and the story is pretty good, especially for girls. On Sunday, I went to the Poetry Slam as usual. I must write some new work and get back to the stage. It’s not like I don’t have anything to say.

On the way home, Scott asked me if I wanted to go to the lake and take a walk. The thought had just come to mind and responded with an unwavering “Yes, and I want to get my feet wet.” We parked between Foster and Montrose where a concert was rockin’ loudly in every direction. I preferred heading north to Foster.

Scott’s not a sand fan, so he stayed in the park and held my shoes while I traversed the beach walkways down to the water. I can’t explain how fulfilling it was to stand in the water. Each year, I make a point to swim in Lake Michigan, as I did throughout my childhood. This year, I didn’t think I’d make it. Although this wasn’t swimming, simply standing there made me feel like jumping in wasn’t so far away. Because it was early evening, most of the crowd was gone, although children ran splashing into the water, which was calm. It was great. I almost cried. I only stayed a few minutes, but that was all I needed.

The Gazebo Quest

One by one, our patio umbrellas are falling apart. There are four of them. There is now only one intact, which seriously inhibits us from dining al fresco in this god-awful heat—although Scott rigged a very nice mister on the patio. Since he and I can’t find offset-style umbrellas anywhere at a reasonable price, I suggested we go with a gazebo. So far we’ve been to Menards, Target and Home Depot. We’ve clicked on a million web sites in the search for the perfect deal. We have measured, analyzed, comparison shopped and called for more specifics. I am ready to purchase one from a web site. Scott is checking Craigslist. Stay tuned.

This quest comes along with a cell phone upgrade quest. That’s another story. I will spare you.

Social Networks

Yesterday, I was pleased to have a very social afternoon. My daughter came over with her friend, Anne who was in town and is engaged. They’re humor and enthusiasm was contagious. We had an awesome visit—and they brought lunch! After that, a long-time friend arrived with a tray of chocolate mints—dessert—and we talked away the rest of the afternoon.

Back to Basics

I didn’t sleep very well last night. I also had a conference call at 9 am, which wasn’t exactly when I would have preferred to talk, but at least I didn’t have to get dressed. Otherwise, I can’t seem to catch up with the paperwork. I’m not painting. I’m not writing much, not even my blog until today! I am creatively constipated. Two huge notebooks, one with medical invoices, claims etc. and the other with poems to be organized, sit on my futon. A shopping bag of old files and documents leans up against the wall waiting to be shredded. File folders stack ready for the file cabinet. Two paintings need poems installed on them, and my art classes resume next week. I need to edit my web site and pay some bills. But I want to invite friends over, paint and write and bask in my own space and time, but it is an oven outside and I am still pretty tired, which makes me crabby.

For the next two weeks I am trying to swim upstream to a regular routine.














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Monday, June 11, 2012

Posted on June 15, 2012. Filed under: Cancer | Tags: , , , , , |

Unless you live under a rock, you may have heard about the Today Show anchor, Robin Roberts announced her leukemia diagnosis. Like me, the disease is the result of prior radiation treatment for breast cancer. Unlike me, hers is a different form—and if we’re competing for the “rare factor,” I win. I couldn’t resist following the “Leave a message for Robin” links and letting her know that even with a rare disease, we’re all out there sharing the proverbial “journey,” which is a term that is SO overused. I also left a link to my blog and promised to share humor as a weapon.

I spent the rest of the afternoon straightening out prescriptions that I received when in the hospital and now need to get from Target because the thought of going to the hospital every time I need a prescription filled is annoying. Besides, how would I find out that the cute little shirt I’ve been eying is now on sale!

I’m still trying to get to the bottom of the paper on my desk. It’s a mess!I also applied filled out forms to apply for disability because who can get anything accomplished when you’re hooked up to an IV half the day and tired the rest?

Today’s infusion was uneventful. I took my netbook and typed away using one arm because otherwise the beeper goes off. When they changed the dressing (I always envision stepping behind a Japanese screen and slipping into a silk robe when I hear “change the dressing”) I asked that they point the picc line in a different direction because every time I bend my arm, the plastic lines dig into my skin. The new direction should solve the problem. My other issue is that I think I’m losing my eyebrows and eyelashes. They seem to be thinning and the skin under the hair is itchy and sore, much like when my hair fell out. That called for a trip to Target to scout out false eyelashes, which I have never before applied. This should be interesting. Stay tuned and thanks for reading!

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Monday, June 5, 2012

Posted on June 7, 2012. Filed under: Cancer | Tags: , , , |

I am having fashion crises. I need to cover my bald head and my picc line arm. Plus the weather too often calls for short sleeves. And I like to look coordinated. Finding the right shirt and coordinated head gear isn’t easy that accommodates Chicago’s crazy weather isn’t easy. Such was my state of mind as I tried to get ready for week two of treatment. As if anyone in the onco unit cares.

Christy picked me up today to keep me company. I warned her that it may be more time with me than her schedule could stand. She assured me otherwise.

First there’s taking of the vitals. Then the changing of the picc line dressing. Finally the arsenic in the IV. She picked me up about 8:45 and we finally left about 2 pm. Christy and I chatted and caught up on all the topics yesterday’s recital day left out. When I got home I was tired, but ready to start finding my way through the disability forms. I called my agent and left messages with questions. Scott asked to help, so I asked him to pick up my matted paintings. He braved the rush-hour traffic and brought back my art and the newly cut mattes. I dropped everything and went about positioning the art in the mattes, which I did with glee. They look great! I’m excited. I also need to finish laying out two poems in paintings as well. I started one, but didn’t get very far. My desk is a mess and needs to be organized!

I also need to call my mother. Being her legal guardian, I am obliged to keep in touch and I haven’t spoken to her since Mother’s Day. I’m feeling ambivalent about talking with her. I have too much to say that I can’t say. She has dementia and although I told my brother not to mention my leukemia, he did and it went right over her head. That’s fine. But I still feel awkward in creating conversation. “What did I do this morning?” I was hooked up to an IV full of arsenic. “What are you doing tomorrow?” “Getting hooked up to a bag of arsenic.” If I manage to visit sometime this year, do I wear a wig? Which one? Should I go when it’s cold, so I won’t melt under a wig? Maybe I need to leverage her dementia and tell her it was nice to see her yesterday. Tell her how great she looked. The four year  old in me wants to tell her so that she’ll give me a hug and tell me everything will be OK…Trouble is, she wouldn’t say that. She would say, “I told you that you should have lost weight!” Yes, sometimes it’s better to rely on other people for your props. I did call her, but she wasn’t in her room.

Scott and I ended the day watching Mad Men. Good enough.

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    A writer and cancer survivor chronicles her renewed dedication to art and words..


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