Cancer

The Deep End of Shallow

Posted on April 11, 2015. Filed under: APL, Cancer, Just fun! | Tags: , , , , , , , , |

Today is my three year anniversary of when I received a call from my doctor telling me I had leukemia and gently nudging me țo drop everything and go to the hospital. I did. Twenty-eight days later, I was released with 18 more months of treatment. That’s behind me now, but I don’t get to celebrate remission for another two years. However, three years is enough time to reflect and squeeze meaning out of the event. After all, isn’t a cancer diagnosis supposed to grant you greater meaning? While I have shifted my focus to creating more art and poetry, as well as publishing my book, I see other changes.

In my case, cancer invited me to discover my shallow side. How so? Well, I am a Buddhist who believes in life after death. In fact, if you know me, you know I am a connoisseur of ghost stories. And while I fantasize a myriad of afterlife delights, such as astral travel or telepathic communication,  there maybe some things a spirit cannot do. Being disembodied could make it difficult to savor a scrumptious bite of chocolate cake or sip a margarita wearing diamonds.

20150325_114431Consequently, I want to grab the best of the shallow with gusto. I want to polish my nails, buy more pretty clothes than I need and order the expensive dessert. This is new for me. I like to think I have tried to try to make the world a better place. Maybe it’s the influence of my Catholic upbringing that focused on dutiful social values; perhaps the 1960s when we turned our backs on materialism;or maybe just my Aquarian humanitarianism. Either way, if I was paid for all the volunteer hours I’ve logged in my life, I would be quite rich. So I surprise myself when I plan a last-minute getaway, pick up a fun shirt at full price that I could do without–and only because I just like it! Once in awhile, I get a manicure.

I wonder if the awareness of death’s inevitability force us to explore the parts of us that lie dormant? It reminds me of the book, Alive, about the Chilean soccer players who crashed in the Andes and had to resort to cannibalism to survive. The two leaders of the groups were very opposite. One was a Christian and followed the rules. The other was a “bad boy” with an attitude. Together, they eventually found their way to civilization and saved the remaining group. The effect on the leaders was ironic. The rule follower became an atheist because he felt his prayers went unanswered. The “bad boy” became a Christian because he thought there was no way he would have gotten off the mountains without help from beyond.

The change in me is more measured. I believe most of what I always have–which is probably the result of prior struggles–and my social conscience is not mute. But now I make time for pleasures; things I would have dismissed as unnecessary years ago. Maybe it’s called balance.

Cheers.

Read Full Post | Make a Comment ( 4 so far )

2nd Act Continues…

Posted on February 9, 2015. Filed under: APL, Cancer, Just fun!, Lending Color to the Otherwise Absurd, leukemia, Poems, Poetry, survivorship | Tags: , , , |

group on stage1e

The Cast of 2nd Act: Survivor Stories from the Stage

 

Yesterday was wonderful! I took the stage at the Athenaeum Theater with 11 other women who have had their own run-ins with cancer. The cast and I, with host Roz Varon from ABC7 shared our stories of how our lives have been redirected by cancer. Hopefully, we inspired others to ride their own waves of change.

My story is about FINALLY publishing my poems and adding the paintings to the collection that became Lending Color to the Otherwise Absurd. I have so much gratitude for all the dear friends and family who attended the show. Special thanks to Judy Pearson and Karen Shayne of Women Survivors Alliance for providing an inspiring platform that demonstrates such positive ways of meeting challenges. Next year, the organization will produce another show in Chicago, and I’m very proud to be chosen for the inaugural 2nd Act.

You Haven’t Heard the Last of Me! 

Today, I’m updating my website, Facebook and social media with upcoming shows because I still have about 100 books to sell. So I am booking readings, driving around with books in my trunk and carrying my “I take credit cards” phone thingy in my purse. If you know of anyone who wants me to read, just reply and we’ll nail a date.

I’ve had some wonderful, and unexpected feedback from my book. The best part comes when people tell me how reading a poem really made them feel better; how a poem made them smile, be surprised or simply a bit of the warm fuzzies. That’s what makes me happy about painting and writing. Adding a little bit of peace and beauty to the world that, too often is anything but peaceful and beautiful. Peace, folks.

Read Full Post | Make a Comment ( 1 so far )

Pinch me!

Posted on January 16, 2015. Filed under: Cancer, Just fun!, Lending Color to the Otherwise Absurd | Tags: |

It’s been a wild week! It all started about six weeks ago when I received an email asking women cancer survivors to audition for a part in a show. The focus is on what one does AFTER cancer, and titled, “My Second Act: Stories from the Stage.” I couldn’t resist. I hammered out my essay about embracing the artist/poet within, talked about my book, reserved a spot to audition—and was accepted into the show!

1462928_10203302010978526_5114809744852697009_n

The 2015 Cast of My 2nd Act: Stories from the Stage

Last Sunday, the ten selected women attended a table reading. It was great to meet the other women and hear their inspiring stories. There were tears and laughter and everything in between. I even learned that one of the performers car pools my granddaughter to her flute class! (Small world story.) The best thing about the show is that it’s about attitude, not cancer. Anyone who’s encountered a major hurdle, health or otherwise, will hear about how to turn the ugly into beautiful.

On Monday, I got a call from Judy, the co-founder of the organization producing the show, saying that Roz Varon, ABC7 reporter and cancer survivor, wanted to interview a couple cast members at the Athenaeum Theater on Southport on Wednesday. She asked if I was available. Why, yes, I am available.

Yesterday, ABC7 ran the segment and they managed to find the 10 seconds where I sounded halfway articulate. I am very proud to be part of this! Here’s the link to the segment.

It will be an inspiring show and I look forward to being in it! You can get tickets here.

Read Full Post | Make a Comment ( 5 so far )

Smack Down—and a Reality Check

Posted on November 19, 2014. Filed under: Cancer, Lending Color to the Otherwise Absurd | Tags: |

If you’ve been reading this blog on a regular basis, you know I have had a “hate relationship” with my estrogen-suppressant. The drug is supposed to minimize risk of breast cancer recurrence. But no matter how many doctors tell me that estrogen is not my friend, I will never believe them. Since 2010, the drug has caused one dingbat episode after another: the fuzzy-headedness, fatigue, achiness, sweat-inducing hot flashes and mood swings that are known best by pregnant and menopausal women. This summer, I had two root canals and learned that I lost another inch in height. Since my bone density was previously excellent, I chalked this up to another estrogen suppressant side-effect. I did some research and learned that the mean little pink pill reduces my risk from something like a whopping 2.4 percent to .8 percent. Not worth it!

Within weeks, I was feeling like my NOT old self. I had energy, clarity, and pain meds collecting dust on the back of the shelf. I was bouncing up and down stairs, and feeling great. I was dancing around my office, getting postcards printed for my upcoming feature at the Green Mill, trying to memorize poems, creating email blasts and social mediating 24/7.

No more Emily-lite. Fully-leaded Emily WAS BACK. The all-great-and-powerful Emily didn’t require 6 to 8 cups of water a day. She didn’t need to exercise. Or sleep. Or wash her hands a million times a day. No, SHE WAS INVINCABLE!

Even when congestion tip-toed into my head a few days before the show, I counted on a trip to the Minute Clinic, the ensuing antibiotics and a session with my acupuncturist to KNOCK it out of me. The show must go on, and it did–with a round of applause. WhooHoo! I did it.

On Monday after the show, the germs rallied and I hit the wall with a thud. I was back, yes, but I was back to pulling bedsheets up to my neck and sucking down cherry cough drops (menthol and eucalyptus are underrated) like they were M& Ms.

OK, I’ve learned my lesson. We are on week #2 of all sorts of pharma-wonders. I am going to bed BEFORE midnight and drinking buckets of water. Even tea. Even powdered packets of vitamin C. I’m spraying crap up my nose and doing what I’m told, but, and I’m still hacking like a college dropout with a computer major. I’m sure I’ll beat this thing eventually, but I’m not going back to suppressing my estrogen. Hear that!

Read Full Post | Make a Comment ( 8 so far )

Discovering the Inner Spaz or See the Book this Weekend?

Posted on September 29, 2014. Filed under: Advertising & Marketing, Art, Cancer, Just fun!, Poems |

 

2014 WW Postcard-Front

You are invited to attend the 16th Annual: Waterworks+

An exhibition featuring works in watercolor and mixed media on paper, and this year showing additional works in acrylic and oil.

ED HINKLEY STUDIOS
4052 N WESTERN AVE | CHICAGO, IL 60618

OCTOBER 4 & 5, 2014   |   NOON – 5 PM

FEATURING WORK BY
Joan Berry | Mary Pat Byrne | Emily Thornton Calvo | Jane Christino  Cecelia Comito | Bradd EastonPatrick Flood | Marie-Pier Valay Guillaud  Bridget Quinn Kadolph | Molly Kuhn | Dianne Rossell

For info, contact Ed Hinkley 773-539-6047 or www.edhinkleystudio.com.


The Spaz Part

I recently received my proof copy of Lending Color to the Otherwise Absurd, my first collection of poems. Holding it in my hands for the first time was amazing. It’s like a new baby. It’s amazing.

Then I realized that this is my last chance to examine the manuscript for typos and design faux pas. If I was publishing with a hotshot publisher, I would trust them to catch this stuff. But I’m not. In lieu of the process of getting a poetry book published, I’ve decided to go solo and self-publish with BookBaby.com. During this process, I have discovered my inner spaz. That’s right. Cool, laughing Emily can be as neurotic as a bride on Day 1. I came up with that analogy during one of my calls to BookBaby. Their smooth, calm customer service rep was the poster child for attentive and reassuring. That’s when it occurred to me that he would make a great wedding planner.

Anyway, I realized that it was time to get down with my detail-oriented self, which always freaks me out because I can actually feel my brain shift into an uncomfortable yoga position. I whined to my designer/anal retentive daughter (she’s whined enough to me in her life) that I needed her to come over and peruse the book for flaws. She was very accommodating.

Between the two of us, I sent BookBaby final files that I hope are perfect. I DID get that feeling you get when no matter what happens, you know did your best.Then I called BookBaby again to see if I could get a small shipment for a gallery show I will be part of this weekend. They were able to promise 25 copies would arrive on Friday. No window for error. The details are above.  I hope you can take a few minutes to stop in and check it out.


Read Full Post | Make a Comment ( 2 so far )

Discovering the Inner Control Freak

Posted on September 8, 2014. Filed under: Cancer |

Self-publishing my first book of poems and paintings, Lending Color to the Otherwise Absurd has revealed my inner control freak. True to control freak nature, I decided to self-publish because I published two books in the 1990s through publishers and would prefer a bigger piece of the pie. Since I have the resources to design and lay out a book, what can a publisher offer me? OK, maybe if a publisher is super respected, my book would magically fly off the shelves at Barnes & Noble, but that’s a long shot and frankly, I don’t have time to keep sending it out before someone says “yes.” I’m getting old. Plus, this spring I received a grant from the City of Chicago to produce the book.

I reveled in assembling the manuscript and working with designers to come up with a great cover, which is often out of your control when working with a publisher. BookBaby.com seemed like a cool place to send my files. emilydeskSo far, they’ve been fine to work with. They’re able to get me a coveted ISBN number and the book should be available through all the usual avenues, such as Amazon and others. They’ll also create a mobile version.

After about seven rounds of proofing, I decided I better just let go and wait for the one proof copy to arrive. By then, I’ll have fresh eyes for one last and final round of changes. I’m sure I’ll find something!

 WhooHoo! My poetry manuscript is in production. Now it’s time to clean my desk! Stay tuned.

Read Full Post | Make a Comment ( 9 so far )

The Cover Story

Posted on August 25, 2014. Filed under: Cancer | Tags: , , , , , , , |

Introducing...Lending Color to the Otherwise Absurd

Introducing…Lending Color to the Otherwise Absurd

After writing several posts recognizing illness as a smack upside the head to make fundamental changes in areas of life that hold one back, I looked at my bucket list and am I tackling #2. Number 1 was getting a website. The second item is getting my poems and “wall poems” published. This is a long-overdue project and I’m not very patient these days.

I took a chance and filled out a grant application for an Individual Artist Grant from the City of Chicago last spring and guess what! I got it, which means I can’t procrastinate anymore! Introducing Lending Color to the Otherwise Absurd.  With the help of some design cohorts, the book’s cover looks great and uses a painting I created with the book in mind.

I didn’t want to send my manuscript to a zillion editors, wait for one to accept it and get sent to market my book for them, so self-publishing seemed a logical choice. BookBaby.com has talked nicely to me and can accommodate the grant budget, so I’ve given the project to them. Hopefully, all will go smoothly. I am planning on a fall release date.

I’ll keep you posted.

Read Full Post | Make a Comment ( 16 so far )

Weighty Issues

Posted on April 19, 2014. Filed under: APL, Cancer, diet, leukemia, survivorship, weight loss |

My last post was about losing weight. They say this is difficult as we age, but I tend to do things out of order, so maybe I will have better luck. As of this week, I’ve lost about 12 pounds since the beginning of February. Not bad. And, I don’t feel like I’m suffering. I still eat chocolate, but portion control is king. The girl in the refrigerator still works and she’s expanded her influence to other behaviors, like procrastination, exercise avoidance, etc.

However, I have hit an energy plateau. I feel very fatigued. I’m in bed by midnight-ish, which is good for me, but I’m usually not awake until about 9 or  dressed by 10:30–unless I have to be somewhere.

I don’t get tired. I get leukemia–NOT.

For awhile, I was concerned about recurrence, but I’m lacking the stupendous bruises and extended bloody noses. I have a blood check scheduled for mid May, but it will probably by fine. Google searches only turn up studies on recurrence, not long-term symptoms. For some answers, Scott and I attended a seminar on what to do after cancer at the Cancer Wellness Center. The facilitator discussed recurrence and suggested talking to the doctors when symptoms arise. I asked, “What does one do when they tell you that you should be feeling fine?” Others in the group let out a few, “Yeah, what do you do then?” No good answers followed. The result: I dragged myself around feeling like a failure at recovery for a few days.

Hence, Facebook. I’m in a group of APL survivors. It’s small—not because few survive, but because this form of leukemia is rare. I posted my woes and received enough responses to know I’m not alone. Most group members are younger because younger people know how to join a Facebook group and APL is a younger person’s disease. One member said she’s finally starting to feel better 1-1/2 years after treatment ended. Another is now experiencing chronic fatigue. I’m only 5 months out so now I’m cutting myself a break. Many others mentioned having the sleepies. Meanwhile, I’m taking more naps and trying to increase my energy with exercise. Yuck, exercise. Well, maybe I’ll lose a few more pounds.

Read Full Post | Make a Comment ( 6 so far )

There’s a Child in My Refrigerator

Posted on February 25, 2014. Filed under: Cancer, diet |

Just when most people are trying to forget they made any New Year’s resolutions, I have committed to losing 50 pounds this year. This is not a foreign concept to me. I’ve written so many articles on nutrition, exercise and weight loss. At a few high points in my adult life, I’ve even reached a reasonable weight, so it’s not like I don’t know how it’s done. The trick is not achieving the weight loss, but maintaining it without feeling tortured.

Myfitnesspal.com is a good site/app to help keep it real. You enter your goal and it gives you a calorie limit. Then, each day, you log in and enter what you’ve consumed. Along with that, I taped a very unflattering photo of myself to the shelf inside our refrigerator. I put it inside because I knew that within a week, I’d ignore it if it was on the outside. However, rather than letting repulsion reset my desires, it sparked the rebel within. I’d open the door, see the photo and think, “Yeah, Yeah, go ahead and stop me. Now, where did I put that cheesecake?” The photo was clearly not helping.

About a week later, I was scanning some old photos and came across one of me at age 10-ish. It was taken at my grandparent’s home. I looked straight at the camera, with a “What are you gonna do, now?” expression on my face. When I scanneOldies 1_0001-004d it, the blue eyes stood out and seemed to accentuate the question. I thought about all the bullshit that was ahead for this child all the disappointments and struggles.  I thought about how great it would be for her to live out the rest of her life with the gusto and wonder a 10-year old expects life to be. It occurred to me that this photo might be an excellent replacement for the old fat lady in the refrigerator.

Within 24 hours, the little girl in the refrigerator was shifting something in my core. Opening the refrigerator and making questionable choices became akin to child abuse. Even when I was out and contemplating a drive-thru, she came to mind. My younger self was in my care and what was I going to do with her? Neglect her? Be a bad example? Or help her to live her dreams? Duh.

This does NOT mean that she can’t have the things she likes. It means those choices are made mindfully. There is still cheesecake in our refrigerator.  She eats about 1500 calories a day with an increasing proportion of vegetables. One day a week, she does not  log in to myfitnesspal.com to calculate intake. Her presence has inspired me to return to the pool, so last week I completed 40 minutes of laps. I also used my yoga DVD for 30 minutes. I lost nine pounds in the past five weeks without feeling tortured.

I think this might work with almost any goal. If you’re trying to change careers let your 10-year old self haunt your choices–and let’s see where this goes.

Read Full Post | Make a Comment ( 9 so far )

Over the Hurdle and Out of the Woods

Posted on February 18, 2014. Filed under: Cancer | Tags: , , |

It’s more than two weeks into my 6th decade and I’m taking time to mark the occasion. Most of my life, I’ve had a premonition that I would have to leap over a health hurdle in my 50s. The breast cancer in 2010 wasn’t bad enough so I also was diagnosed with leukemia in 2012.

The premonition also speculated that if I survived my 50s, I would live to be 88. During the weeks preceding my birthday, I was super careful. The week before my birthday, my bloodwork showed I was still in remission. I drove with extra caution. I navigated stairs with added attention. I avoided falling ice.  If the universe was going to take me out, I wasn’t going to make it easy. So as of 8 PM on January 30, when I officially turned 60, I knew I was heading for 88. I was so happy, I shed a tear. I have renewed hope for the future. Yes! I am now 60! Take that, Universe.

Read Full Post | Make a Comment ( 6 so far )

The Last Chemo Pill & a Dose of Gratitude

Posted on October 2, 2013. Filed under: Cancer, Family |

Sunday night, for the first time, I gleefully grabbed the five little brown and yellow capsules from my old-lady pill dispenser. It was my last dose! A year and a half of medicinal aggravations lay behind me. Any side effects will be greatly reduced by the knowledge that they are my last.  Yes!After treatment head shot

One of my cancer comrades, Tony in New York, ended his treatment with a blog post tribute to all the family, friends and professionals who helped him through his leukemia ordeal, which was way nastier than mine. I think that’s a good idea. So here’s my thank-you post and I know i will reread this and be horrified that I forgot some wonderful people. Chalk it up to chemo brain.

First, my husband, Scott has been a rock and always looks for ways to make my life easier and more comfortable. We celebrated our seventh wedding anniversary on September 30 and he’s proven that he can handle “for worse.”

My daughters stepped in as advocates when I was in the hospital and showed me the real women they have become. Many times, Christy drove from Elmhurst to simply sit by my side before going to work. Veronica arrived after work and always made sure the Thai food we ordered in was cooked to death so I wouldn’t get any germs in my delicate system. Then, there are their friends and families who spread the word and sent good wishes. And my grandkids who entertained me even though they were bored out of their minds. My in-laws from near and far have also held me close.

I am also blessed (in the Buddhist sense of the word) with an army of friends who each in their own way kept giving me something to look forward to with their visits, calls, emails, cards and amusements. I keep the three-inch stack of get well cards on my office shelf as a reminder. Laura, I loved the car deodorizer shaped like the Alamo and your insistence that it better smell like it. Ally, you kept me painting and inspired. Amy, thanks for showing you care even if it was convenient. Maria and Henry, you’re always there for me. Pam, Isabel, Kathy, Karen  and Colleen, you were far away, but it didn’t feel like it. Kathy, you and your team put together the biggest batch of hospital survival items EVER! Dick and Connie, thanks for letting us hibernate with you.  Jane, your wit should be researched for its cancer-killing properties. Laughter IS the best medicine. Mary, thanks for being so open about her own cancer drama and patient about getting assignments completed. Mark, thanks for waiting for me to get out of the hospital so I could be your website writer with attitude. Thanks for wanting the attitude. Marc, thanks for bringing your 1234518_10153261708380472_1385104933_ncalm, care and simpatico being to my life. Yes, you bring calm. Go figure, And what would recovery be like without the slam? My group of breast cancer sisters kept me in the fold even though they were probably creeped out by my turn of events. And there were so many more friends, Facebook and otherwise, and blog followers who strengthened me with their good wishes.

I can’t forget the attention from Dr. G, Kara and the nursing staff who still greet me by name if they see me pick up meds. I’m done with treatment, but with monthly blood checks, I haven’t seen the last of them.

I am grateful to all of you. I am leaving this episode with all that kindness, a new path for the future and a kickass collection of scarves. I will keep up the blog, but there will be fewer leukemia and cancer tags and more art and poetry tags. Journey on, friends. Journey on, friends. Peace.

Read Full Post | Make a Comment ( 6 so far )

Making the Grade

Posted on July 21, 2013. Filed under: Art, Cancer, Family, Just fun!, Poems |

Oh, I’ve been busy. Highlights? I went to Eau Claire, Wisconsin to check in on my mother and visit friends in Lansing, Iowa. Scott and I exchanged offices and did a major cleaning. (If you’ve ever been here, you know this is no small task.) I’ve had a burst of activity with painting, writing and two house guests. And, I cleared two more blood tests and two cycles of ATRA.

Driving Miss Emily

My mother, who has dementia, will be 90 in December, but she still remembers me. I sent her a photo of my new hairstyle, but she didn’t remember and wondered who I was. After the first time, she recognized me though. She was her old self and took every opportunity to tell me that I need to lose weight. Urgh. Duh.

2013-07-02 11.08.47

Mom and her visitors

To make this otherwise draining trip more fun, I like to drive up with my daughter and grandkids. This time, my daughter drove in her car. I’m not sure if the last-minute change was because she wanted her amenities—like DVD player, individual climate controls and super-duper space—or she just doesn’t trust my driving anymore??? Anyway, that was fine with me and the deluxe vehicle’s mileage was about the same as mine. We stayed at the Metropolis, which I’ve nicknamed “Vegas for kids” because of the number of activities for munchkins. There’s a water park, bumper cars, video arcade, rock-climbing wall and more. It’s like an escapee from the Dells. The kids love it.

IMG_7179

At The Thornton House with Frank and Steve

I loaded up my mother and brother, who also lives in Eau Claire, and brought them over to our North woods Shangri La after meeting with my mother’s social worker, nurses, etc. I’m her guardian. So when they knew I was coming, they asked me to bring her four skirts and two pairs of pants because she’s gained weight. We won’t go into the irony of that. They suggest hitting the thrift stores, but my usual delivery of supplies includes a mix of new and used. Chicago has some mighty awesome thrift stores.

Then, it’s on to Lansing, where two wonderful guys have preserved my dad’s family home, The Thornton House. The Victorian stands on a hill overlooking a teeny town on the Mississippi. When I visited my grandparents there as a child, it was boring. Now, I enjoy its charm. My grandchildren talked about Frank’s waffles all the way there. One of the town’s main attractions is Horsfall’s Variety Store, a retail odyssey of outstanding crap! Almost anything that’s every found its way to an overstock pile is here, so of course we paid a visit.

2013-07-03 14.02.10

My cave dwellers

On the return trip, we made time for a visit to Cave of the Mounds. I was pretty sure no one in our vehicle besides me had been there or anywhere like it. It’s a great beginner’s cave with enough unique formations to hold a kid’s interest for the hour-long tour. Well worth it. Plus, I always love the atmosphere in caves. The air feels so clean and cool.

2013-07-19 16.20.54

The new space

Trade Ya

Speaking of Horsfall’s walls o’ clutter, Scott made MAJOR progress on organizing and recycling our stuff. He started in the storage room and then asked if we should trade offices considering our impending guest list. I suggested that if we traded, I should combine my studio and regular office because his office is really large. After a lot of sweat and muscle, presto change-o. I LOVE my new space and all the magical storage. Even my old-man desk.

Just as the dust settled, Scott’s friend from South Carolina came to visit with his son for a few days. They were able to camp in separate bedrooms. I was able to paint without worrying if someone wanted to go to bed. It’s been refreshing to have things spruced up. We’re not done yet.

“A+” in Blood Testing; “C” in Most Everything Else
I’m happy to say that my blood tests have been fine and I only have three more months of ATRA cycles! Some side effects have SUBsided. I’m not experiencing any more rashes, however I get a waterfall of sweat down my face with the slightest exertion. I’ve continued our river walks and even went out for a bike ride. I think the fatigue has been more severe…or maybe it’s my summer energy level. I suck at summer.

Today, Scott and I went for a Thai lunch and then to the Ethnic Arts Fest in Evanston. After about an hour, I felt horrible. I felt dizzy and my stomach was a mess. My face was streaming and my hair was drenched with sweat. The women’s rest room had a line trailing out, but I begged a woman to let me get in front of her and she accommodated me. That was enough. Scott and I were both ready to head home and we were both tired. Not sure what that was about. That’s the trouble with cancer: you never know if some weirdo symptom is normal or because of some awful drugs messing with you.

My other frustration is keeping up with friends. I haven’t had a lot of energy and as you can see, my life is currently demanding a lot of me. I’ve forgotten to return a lot of messages and just haven’t had time to talk as much as I’d like. Plus, I’m screwing up appointments and general information that makes me look like an idiot. My daughters’ birthdays are this month and I have yet to make a plan, so you think I’m MIA or just plain rude, you’re not alone. I’m sorry.

The latest poem painting, Why I Love Old Men

“F” in Grant Writing
A few months ago I applied to the city for a grant to cover printing my book of poems. I was rejected. Oh well. Then I showed the book to my friend who said it was good enough for a big publishing house. So I went to the bookstore to see who’s making it onto the shelves. Turns out the 10 names I wrote down were either not currently accepting poetry or their reading period is closed, or they are only publishing big names. Back to plan A, which was publishing the book myself. Move over, Dorothy Parker.

Read Full Post | Make a Comment ( 2 so far )

Sniffles and Songs

Posted on May 31, 2013. Filed under: Cancer, Family, Just fun! | Tags: , , , , , , , , |

Antihistamines and Cancer

In my last post, I mentioned that I wanted to research the possibility of antihistamines being linked to cancer.  While I found studies that negated the correlation, I was pretty surprised at how many pros were asking the same question. More disturbingly, one study found a link to a type of brain tumor. And who financed the other studies???

I read enough to quit the 24-hour Allegra I have been on for four years. Originally, I was having about four annual sinus infections that required antibiotics. Allergy tests revealed a bunch of foods and environmental factors that I was mildly sensitive to, but nothing was serious. Together, they “put me under” with the changing seasons. I’d tried everything—neti pots, saline washes…Scott even came up with using a massager behind my ear, which seemed to easily release a bunch of clogging junk.

Since I was taking a natural mushroom extract to boost my immune system, along with the Allegra, an antihistamine to squelch my immune system’s allergic response, I wondered if they canceled each other out????  Plus, leukemia treatment was described to me as resetting the immune system, so I was curious to see how my new immune system would behave if I quit Allegra. And I was also in the throws of a rebounding sinus infection, I had about six weeks ago, which was treated with antibiotics. I had nothing to lose.

Did we run out of tissues already?

Did we run out of tissues already?

The first week without Allegra was hell. I felt really sick and my nose was a waterfall. I was coughing and relied on quarter dose of imitation NyQuil to sleep. Yes, it did contain an antihistamine. After seven days, my sinus infection was gone! That was five days ago and I feel way better. I still sneeze a few times a day—and I haven’t sneezed since I started Allegra, but somehow sneezing seems like a healthy response. I also pop a Halls cough drop here and there. I think the old-school menthol helps keep my head clear.

Here are some links I found if you’re interested.

http://cebp.aacrjournals.org/content/17/5/1277.full

http://onlinelibrary.wiley.com/doi/10.1002/ijc.11240/pdf

http://jnci.oxfordjournals.org/content/86/15/1172.extract

Natural remedies for allergies:

http://www.livestrong.com/article/146553-natural-alternatives-for-antihistamines/

It’s always nice to have a natural alternative, but sometimes natural stuff can be as fraught with downsides as anything else. As a matter of fact, after writing so much healthcare copy for years, I always wonder about the downside of some new miracle food, drug, herb or exercise. There are no golden solutions!

Surviving a Taste of My Old Mojo

My friend, L celebrated her 50th birthday a couple weeks ago. I was invited and have to admit I was a little nervous about my energy level for a night on the town.  In addition, L and her crowd is roughly a decade younger with party know-how and I don’t think any of them have chemo pills on their calendars. AND, I love L for her classy taste in debauchery and unadulterated wit.

BUT, I was two days from starting chemo drugs so I was at my best energy level of the month. And, it wasn’t like we were going rollerblading or jogging along the lake. The plan included theater and karaoke, so I could sit for most of it—not exactly strenuous.  I geared up with a rest in the afternoon and left with my thoughtful gift of vitamins for 50+ women, some handmade earrings and other carefully selected odds and ends that must not have been spectacular because I can’t recall what they were.

We started at Mary’s Attic, a small theater above Hamburger Mary’s restaurant, for a Hell in a Handbag Production that parodied a sort of Mommy Dearest theme, but used Lana Turner. Best line: The star, a man in drag, hustles to her daughter’s aid shouting, “What’s wrong, honey. I came as fast as I wanted to.” I can think of many uses for that line.  We had a great time.

World's Best Partiers & No Injuries!

World’s Best Partiers & No Injuries!

From there we went down the street to a bar where we united with a few more people before most of them got in a cab and went up Lincoln Avenue for Korean Karaoke. Because I didn’t think I’d last much longer, I drove and chauffeured a couple other people. I suspected my suburban passengers, even with alcohol in them, were a bit nervous when the only parking space was in front of a parkway tree with a man standing against it clearly in vertical passed-out mode. As a lifelong Chicagoan with a keen sense of danger, I assured them he was harmless although I prayed that if he needed to vomit, he’d turn around and avoid my car.

We hustled into Lincoln Karaoke, which was divided up into private rooms. The perimeter was lined with stain-resistant seating and a stage that doubled as a coffee table or vice versa was in the center. Flat screens were on each wall with the “word ball” bouncing along the lyrics and beautiful nature scenes, which made NO sense in the background. In walking to our room at the end of the hall, I wondered what went on in the other rooms that are rented by the hour. Then I decided not to wonder.

A pleasant Asian woman entered, distributed four microphones and demonstrated how to select a song from the binder listings, which were arranged by title. The first half of the book was in Korean. The second half was in English.

We leafed through the plastic-covered pages and ordered beer. Given my deadline with a week of Trentenoin/ATRA pills, I did not indulge. It wasn’t long before the coffee table was designated as a stage and the one male in the group had to sacrifice his running shoe. One of the partiers had filled it with beer and passed it among us. This didn’t make being on the wagon very difficult and I don’t need alcohol to make a fool of myself.

I LOVE to sing. Sometimes I can sing well. Other times I can’t. Usually if I open my lungs, I get better. The variety of songs was hilarious, and anyone who wanted to sing was welcome to join in. My highlight was bellowing Gloria Gaynor’s, “I Will Survive,” which sort of sent me to my own little place in the room unaware of everyone. I guess it ended up being a “Fuck yourself, cancer” moment.

Although it was one-thirty when I got home, I was hyped knowing I still got it in me to do things like survive getting home at one-thirty—even though I don’t really plan on doing that again. Maybe when I hit 60 in January???  May we all be able to retain our party souls into our 8Os.

L, we LOVE you. Have a great year.

Read Full Post | Make a Comment ( 6 so far )

Sometimes, It’s all About Numbers

Posted on May 21, 2013. Filed under: Art, Cancer, Just fun! | Tags: , , , , , , |

numbersNone in 100,000…and I’m not talking Lotto
Two weeks ago, I had my lovely monthly meeting with Dr. G. He spared me the six month bone marrow biopsy by trading it for a simple “give-me-100,000-blood-cells test.” This is a simple blood draw that gets sent to a hidden bunker somewhere on the east coast where they magically examined 100,000 cells for any trace of those immature leukemia cells. The numbers came in: O <- That’s a zero; not an emoticon. 🙂   <-That’s an emoticon.

Numbers, Numbers
Well, one of the side effects of Trentenoin is weight gain BECAUSE I ALWAYS FEEL HUNGRY! I needed that like a whole in the head. If I had to get cancer treatments, why couldn’t they make me nauseous and skinny. (They tell you that people with extra weight do better with chemo.) So, I’ve put on almost 20 pounds since the diagnosis and it’s not like I could afford to. So once again, I’ve decided to ride the diet wagon. It’s a ride I know well. I get to an ideal weight about once a decade, but I have to admit, I haven’t been back there since before the millennium.

I’ve written about 40 million words on healthy eating, so I don’t need tips about the lowest calorie foods or fat-free delicacies. I need willpower advice. Hence, I am examining my cue, actions and rewards as outlined in The Power of Habit. I’m also trying to throw in a little more exercise.

Part of the issue has always been my ambitions. I never cared about sports or marathons. All the action happens in my head, which spins with Olympic potential. Runners, I will write and get paid and I will give you money to feel good about myself. However, age is catching up with me and I’m feeling more achy and unbalanced, so I need to haul around less weight. I figure, I’m just going to eat less, weigh myself once a week, walk, play basketball in the park across the street, swim and keep a list of numbers that I hope will decline. Anyone want to join me?

One More Bit on My Health
About a month ago, a sinus infection took me out for a good two weeks. After a round of antibiotics and every sinus remedy available, it cleared up only to return with a vengeance last week. Stuffiness, coughing, vertigo when moving from lying down to getting up—awful . I guess it’s because I planted flowers instead of painting them! To cope, I’ve been on Allegra for the past few years. Now I’m wondering if allergies are the immune system’s overreaction to elements, if antihistamines suppress the response, is there a link to cancer. I mean, isn’t the immune system supposed to go after cancer infiltrators? If antihistamines tell my system that everything’s cool, doesn’t that give cancer cells a green light. I’m wondering if this has ever been studied. Google…here I come.

Farewell to Five, Yes, Five Paintings!
I’ve been studying with Ed Hinkley for about four years. He’s awesome. I didn’t realize how awesome until I took a class at the Palette & Chisel downtown. Here, I receive a PDF of a barn or a forest or a river or a forest with a river. You get the picture? Then, step-by step, we all do our own rendition of the teacher’s savvy strokes. Argh. I haven’t painted anything I actually like yet and today is the last class.

HOWEVER, Ed brings out our unique styles and throws in technique as needed, which I’ve learned is more often than I realized. The result is a group of artists who don’t look like they’re in the same class. Excellent. Then a few of us participate in spring group show at August House Gallery each year. The first year, I sold four paintings. The second time, I sold nothing and frankly, I remember having a lot going on and not feeling like I got my act together. This year, I asked the “universe” for a heads up on my artistic direction by selling at least how many I sold the first time. I’m happy to say I sold five! Plus, one was to a young couple I didn’t know. Cool.

Flying Through Time

Shorline SerenityOahu Beach CrowdRed Rock 14x11-9.25x3.75How we move #2 (2)

I’ve been asked if I feel sad when someone walks away with a painting. Hell no. I’m so happy, flattered, validated that someone will enjoy a tiny piece of me, I could cry. If I want to look at it, I have pictures. And, I can paint more.

Read Full Post | Make a Comment ( 4 so far )

The First Anniversary

Posted on April 12, 2013. Filed under: Cancer, Just fun! | Tags: , , , |

I couldn’t let this day go by without acknowledging that it’s been one year since I was diagnosed with leukemia—and I’m still alive. What a trip! In some ways it seems like yesterday and in other ways it seems like forever. Either way, I’m happy to have so much wonderful support from everyone.images

So, I’m now swallowing 10+ pills a day for one week each month until November. That seems like a long time, but I have to deal with it. Since it seems the side effects are getting worse, I was wondering if the effects of the drug are cumulative. I was also wondering how long they might linger. Seems like normal questions, right. Well, until yesterday, I didn’t really want to know the answer because it might be discouraging.

That reminds me of a phenomena: When a woman bursting with pregnancy asks me when I think she’ll finally pop, which on occasion happens, I tell her that labor comes when your desire to “get it over with” outweighs your fear of “getting it over with.” The same is true in the search for answers to medial questions. I will search for answers when the anxiety of bad possibilities is greater than the worst news. And, such was my week.

So, with the fear that by November my fatigue will hit slacker heights, I figured that I was ready for some information. The logical response of course it to just ask Dr. G. But the benevolent Dr. G tends to sugarcoat truths to avoid the side effect of causing freak-outs. In fact, if Dr. G had to tell a patient they were terminal, I’m pretty sure it would sound like this: “There may be nothing we can do for you, but it’s good to know that many patients find resting in peace to be an enjoyable and rewarding experience. Look at it this way—no more worries about that nasty health insurance deductible.

I digress. Instead of asking Dr. G., I hopped on the Internet and sent out a few emails. I couldn’t confirm or dismiss the notion of cumulative effects, but I found a lot of side effects that would explain some of the lesser effects I’ve experienced. Sadly, nothing was really encouraging and I’m pretty sure the real answer is that “everyone is different.”

Meanwhile, I’ve had a wicked sinus infection that has migrated to my throat. How lame is that? It’s like surviving a tornado and breaking your leg in the rubble. Oh well. It’s hard to take a sinus infection seriously anymore except I can’t tell if I feel like crap from the infection or the drugs.

Here’s to me being able to bounce back with gusto.

Fun with Pharmacists

After a zillion trips to Target pharmacy, I want to think the people behind the counter can recognize me…sorta. Of course, HIPPA would argue otherwise, but come on, there’s no reason to pretend I’m a new customer.  Nevertheless, we have fun.

But that’s not my pharmacy story. My story begins with the Cadbury egg I purchased last week.  While checking out my items, along with a prescription, at the pharmacy, the tech said, “Mmmmm, a Cadbury egg. Only one?”

Pharmacy mug“Yes, only one,” I replied.

“But they’re on sale and they’re so good!” she challenged.

“That’s why I just want one.”

She laughed and said, “I couldn’t get just one.”

“I understand but I ONLY WANT ONE,” I stated with a knowing smile and emphasis.

“Easter candy is WAY better than Halloween candy,” chimed in the pharmacist behind the counter who was looking down as he took pills out of a big bottle and put them in a little bottle.

“I agree and I still only want one,” I said as I signed the box. “I don’t get you guys. There you are, surrounded by every type of drug anyone could want and you’re all drooling over my Cadbury egg.”

They laughed.

* * *

I usually try not to make a whole post about health issues. It’s like listening to that table of old people next to you in the diner. However, since is the anniversary of it all, I thought you might let me get away with it.

Read Full Post | Make a Comment ( 6 so far )

Spring and Health, It’s Been Too Long!

Posted on April 5, 2013. Filed under: Art, Cancer, Just fun! |

If blogging has taught me anything it’s that hammering at the keyboard is affirming. When I don’t write, my soul feels constipated. This blog also makes me feel heard. So here’s another installment.

PushIMG_7077ing Forward with a Painting Career
In my effort to make painting into a “real” business, I have been exploring a lot of avenues. I was happy to speak with an art consultant about my work and how I can build it. I joined several arts organizations. I started art class again. I inventoried my paintings and am creating a catalog. Scott helped by measuring everything and taking tons of photos. I filled out a grant application and have another one cooking. I’m proud that I’ve been able to do this much, but I feel like I’m just scratching the surface. I guess that’s not too bad for someone whose energy level couldn’t light a 40-watt appliance bulb.

I also finished another “poem painting.” Meanwhile, I will be showing some work at August House Studio in May. Here’s the scoop:

15th Annual Waterworks Exhibitionwaterworks-2013-rev

This year will be the 15th Annual Waterworks exhibition – Aqua-media works on paper by students of the Ed Hinkley Classes. The exhibit will be held at the  August House Gallery, 2113 W. Roscoe from May 5 – 19.

Exhibit Dates: May 5 – May 19, 2013
An opening reception will be held Sunday May 5, from 1 to 5 pm.

Gallery hours through the exhibit will be
Thursday through Saturday May 9, 10, 11, and May 16, 17, 18, from 1 to 5 pm.

A closing reception will take place on Sunday May 19, 1-5 pm

Tell Us How You Really Feel
Just like spring, health is dragging. I’m on a week of ATRA every month until November, which seems SO FAR AWAY. It seems to have a cumulative effect, but I don’t want to know for sure, or I might feel worse. Better not to think about it. I was hoping I’d be feeling better by now because I start another round on Monday, but I’m still pretty sleepy, achy and shaky. (Sounds like names of a few of the seven dwarfs.) Another side effect is rashes. The weird thing is that they start on my back and work their way down my body throughout the month. So right now, my calves are all scaly. The roughness produces little sores. Nice, huh. Well, it’s an opportunity to go through all the lotion we have around here.

I am happy to have another doctor appointment with excellent blood levels on all fronts. Plus, my doctor said he’d spare me from having another bone marrow biopsy and just use a high-end analyzer to see where we stand next month. He’s saving the last bone marrow biopsy for the end of the year. Fine with me. Those things are painful!

Hair or Lack Thereof…
I went for a haircut a couple weeks ago and oh my…it’s now way too short. At least I won’t need another cut for awhile.

Spring, please.
It seems it is taking FOREVER to warm up, but I keep reminding myself that we had some 50-degree days last December, so it makes sense that things are dragging. Also, June always has a 90-degree week which is so not my favorite weather, so I should just shut up and live in the moment. Ommmmm.

Read Full Post | Make a Comment ( None so far )

Giraffes, Flamingoes and Other Friends

Posted on March 17, 2013. Filed under: Art, Cancer, Just fun!, Paranormal, Poems |

20130221_190027

This is the most hair I’ve had since chemo started!

Oh geez…It’s been about a month since I’ve written a post! I’ve thought about it, though. I will blame our vacation. It was LONG overdue and well-deserved, I might add.  Mid-February, Scott and I flew to Florida—Tampa to be specific. Our friends live just south of Tampa and invited us to stay with them. My dad used to say, “Fish and house guests stink in three days,” so I’ve continued to use that as a guideline for visiting others. Since we wanted to get away longer than three days, we also planned a road trip to Jacksonville to rendezvous with my friend there before circling back the other side of the coast and flying home from Tampa 10 days later. The highlights?

Favorite line: “Another boomer down!”  –which Dick informed us is the local response to a siren in a retirement community, which is everywhere in south Florida.20130226_125248

Favorite museum: Salvatore Dali Museum in St. Petersburg. I think I finally “get” his work.

Best Sub-trip: Afternoon with girlfriends in Cassadaga Spiritualist Camp, a town of working psychics and healers. One told me I’d gone through a lot of changes and was supposed to be more creative and artistic with my work, but I was trying too hard to make it happen quickly.

Favorite restaurant: Hmmm…tough one. Perhaps our last breakfast with our hosts in the little house-like building with the fireplaces. Or maybe the fun grease pit on the water somewhere on our way back from Jacksonville.20130227_104930

20130225_143313Dumbest Act: Tripping over a cement parking thingy, falling on my face and cracking my phone’s screen. No injuries, though.

Best deal: Hotel in Jacksonville for $59/night. It was no palace, but it had everything we needed and it was clean.

I gave this guy a branch of leaves. What a tongue!

I gave this guy a branch of leaves. What a tongue!

Most novel deed: No, not getting a psychic reading. It was feeding giraffes at the Jacksonville Zoo.

Best souvenirs: cool earrings, fudge from Fudge Bucket in St. Augustine, where the salesperson amused me with her ample enthusiasm, and a T-shirt with a guide to venomous snakes.

Oh yeah, I’m in treatment for leukemia.

To get the most out of this getaway, I had to figure out how I’d have energy to do all the fun stuff. This meant playing with my med schedule so I wouldn’t be so tired. I asked Dr. G for advice and he said I could move the week that I take medication “a week or so.” I stretched that to two weeks…oops. The only problem with that was, to get back on track, I only had two weeks between treatment weeks, so the effects were sure to pile up. They did, but not as badly as I expected. It was worth it.

Not only did I have more energy to see friends and Florida, I experienced a taste of what it will be like when I quit taking the meds in the fall because I had five weeks between meds on the front end. I wasn’t quite my old self, but I came close.

I had such a good trip that I totally forgot about my doc appointment the day after I returned. I eventually noticed it and rescheduled for Wednesday. Oops.

Signs of a Great Getaway

You’re looking forward to sleeping in your own bed.

You forgot you bought a new robe until you go looking for yours on your first day back.

You didn’t rack up debt.

Your immune system withstood airline germs.

Every day offered great memories.

You had time with friends, nature, culture and your spouse and yourself.

Back to Life

I’ve also been painting like crazy. I’m still in the process of building inventory. I also signed up for another art class and have more images in my head to paint. I’ve also entered a few juried shows. I’m moving forward, but not too quickly. I’ve also written a couple of new poems and painted a new poem painting. On the business end, I doodled out a marketing plan for my art. Wish me luck.

IMG_6873

Read Full Post | Make a Comment ( 6 so far )

The Train Roars In & Out

Posted on February 8, 2013. Filed under: Art, Cancer, Family | Tags: , , , , , , , |

I decided my energy level is like a train. Sometimes the train sits for awhile at the station sending its energy through town. Sometimes it roars into town and right out again leaving everything flapping in its wake. That’s when I sprawl on the sofa and feel like some Victorian invalid on a bad day who suffers from the “vapors” and needs to be taken to sit by the sea.

It’s Not My Problem
The Cancer Wellness Center in Northbrook has a lot of free programs for families experiencing cancer. I decided to try Reiki there and maybe pursue it more nearby if it was beneficial. What happened was interesting. About midpoint, I started feeling all quiet inside and I heard a voice say, “These are not your problems.” I realized I was worrying about everybody and I do mean everyone. In fact, I’ve been known to soak up negative energy like a duck in an oil slick. Instead I visualized wrapping them in a garbage bag–the problems, not the people–and putting them aside. My whole demeanor lightened. I wasn’t crabby. (Yes, I get crabby.) Sometimes, I think we just have to STOP and SHUT UP, so we can hear our own inner voice slap us upside the head.

Right now I am sitting at my desk. I’m warm enough. I just ate dinner. My husband is content. My bills are paid…for now. I don’t have any problems I can’t handle. Yes, I want my family and friends to be healthy and happy, and I will do what I can to help, but their problems are not my problems. It can also be considered living in the moment. It is such a simple de-stresser! Try it.

Painting in My SleepIMG_6872
I’ve never been one to sleep more than five to seven hours a night, but lately it’s been more like eight or nine. Then there are the dreams and last week, I dreamed a recent painting had little people crawling in and out of it. The dream prompted reality, so I have a new series in mind and this is item #1.

Day-to-Day
Even though “the train” was running in and out of town, the past week was pretty busy. Scott and I went to a friend’s pot luck dinner. He made homer simpson slippershis famous vegan cupcakes, for the vegan hosts and also brought along his Homer Simpson slippers, which he does when a snowy day makes one suspect we might be asked to take off our shoes. Either way, they are good conversation starters.

I also went to the Mill, but broke my reading streak by sitting that one out.

On Monday, I reconnected with my acupuncturist. I haven’t seen her since before I got the leukemia diagnosis. I was hoping for a little relief from the aches, anxiety and low energy. The body aches felt better, but the next day, I got a weird sensation in my head. Weird. I’m scoring the Reiki higher this week. Went to art class too, which is always therapeutic.

Thought for the week: Remember, it’s probably not your problem.

Read Full Post | Make a Comment ( 4 so far )

Remission…Knock on Wood

Posted on February 1, 2013. Filed under: Cancer | Tags: , , , , , , , , |

WhooHoo! I had a visit with Dr. G today, my oncologist. My monthly blood work came back with “nothing to talk about,” which is code for perfecto! Nice birthday present. I enjoyed seeing a few of my favorite nurses who were so much a part of my life last summer during treatment. Anyway, Dr. G said I’d be on the monthly dose of Atra for a year. We went over the list of my side effects: fatigue, goofy dry patches of skin, low energy and shaky hands, which have all improved by about 30 percent since stretching out the doses of Atra. He also said I could mess with the schedule so I don’t have to feel like crap on vacation. WhooHoo.

I’ll also have to have another bone marrow biopsy in April and after that I get to declare myself in official remission. Right now, Dr. G says I’m probably in remission anyway, but a clear biopsy will make it official. At five years, I get to be declared “cured.” I wonder if I already put in a year?

Evading Cooties
Early in this blog, I referenced a creepy feeling that I’ve had for most of my life. The “feeling” is a notion that some major health challenge would hit me in my fifties. If I lived through it, I’d hold out for age 88. Weird, huh. Some might say the expectation created the reality, but I think not. So this 59th birthday means, if something is trying to take me out in my 50s, it now has less than a year. It’s going to have to be a piano falling on my head or blowing out a tire on a one-lane mountain highway because my body has proven its ability to blast out cooties and I’m pretty sure it can take on most anything at this point. Such is life. After 60, I’m good until 88 and maybe even longer.

Paint and Cake
Last night I stopped and bought a yummy cake on the way to art class to share with my class to celebrate my birthday. What a great combo!

Read Full Post | Make a Comment ( 5 so far )

Making and Keeping Connections

Posted on January 28, 2013. Filed under: Art, Cancer, Just fun!, Poems | Tags: , , , , , , , , , |

Last time I wrote, I was anticipating a dentist visit. I’m happy to report that my dentist rebuilt the broken part of my tooth so no root canal will be necessary. Yay!

The Power of the Blog
A few weeks ago, I received a comment from a young woman who also had been diagnosed with APL. Within hours we exchanged emails, phone numbers and had a great conversation about our shared experiences. She lives in the area and will celebrate her two-year anniversary in a couple months. (Congratulations, Marci.) If you’ve ever suffered from ANYTHING, you know how rewarding it can be to share details with someone else who has gone through the same thing. Thank you, Marci, for sharing.

tret0808

Evil Potion

Tretinoin is Back on the Menu
Three weeks without Tretinoin and my scaly, red skin cleared up. I even had a little more energy. The achiness and fatigue still hung on, but I felt better overall. Amazing. Now, after another week of the evil potion, I am back to lying in bed until 11 a.m. and lathering on oodles of lotion. Urgh.

Since the drug is also used to treat psoriasis (in lesser quantities), I have now have great skin. Not that I have a skin problem, but there’s definitely an improvement. Now if I could just make it less scaly.

On an even brighter note, I went for my second haircut! I’m keeping the short look. It’s really thick, but the salt and pepper is not exactly close to my formerly dark blond hair. I’m wondering if this is the new color or the interim color. We shall have to wait and see.

Other than those symptoms, I’ve only had a few moments of chemo brain…like when I totally zoned and got a call from a friend I’d scheduled a lunch date with. She called me from the designated restaurant at the designated time wondering if she’d mistaken the time or place. She didn’t. I left the house and luckily was there in less than ten minutes. Sorry, Susan.

To Flu Shot or Not
With the doomsday reports about the flu epidemic, I considered getting a flu shot, but decided to pass. After all, my system has been pummeled by drugs over the past year and I think I’m better off risking it. I still feel a little guilty—kind of like I decided to leave the door unlocked. None of my doctors have even suggested it. They have asked if I want one, and when I say, “not really,” they move to the next question without even telling me to wash my hands. It’s like they want to tell me not to get one, but they can’t. So far, so good. I haven’t been sick…knock on wood.
IMG_6815Another Poem in a Painting
I started art classes again and last week, I finished another poem in a painting. This one was a challenge to lay down the poem in the piece, so we made some adjustments. Here’s the text:

Counteract
Who counts
the bodies?

How many missing limbs
equal one?
Which body bags,
lost tags
add to the tally?
Bodies that fall
seconds before the declaration?
or minutes
after the truce?

Who counts the body
of knowledge lost
in clouded memories?
Who counts
the piece in the parent
when the epaulets show
through the peephole?
Or the low voice on the phone
asks for his parents?
Who counts the child’s body
if it’s the enemy’s?

How many are missing in action?
Covered under smoldering ash?

Who counts the spirits
when bodies become armor?
when eyes become empty bowls?
when people become photos?

I now have about 15 paintings with one of my poems in them. I’m excited about getting my book of poetry together and will include them. I’ve got about 80 pages so far. That should be enough. One has to stop somewhere.

20130126_211001_resizedReliving the 80s
Last night Scott and I went to the Old Town School of Music for a student/teacher tribute to Madonna and Prince. It was pretty funny and brought back memories of my kids listening to Madonna songs. I’d read about it on www.gapersblock.com, which often has events that you’re not likely to find in the Tribune’s art section. The show was great fun. There’s so much more soul to a low-budget show than the big-budget program. However, we bowed out a little early. I was yawning and Scott had met his 120-minute limit for sitting still in one place. That’s another good thing about small productions: You don’t feel obligated to stay longer than you want to just because of the price of your ticket.

100_2715Pink Flamingos…Here we come!

Scott and I are SO overdue for a vacation, so we booked flights for a Florida fly/drive trip. Our friends are snowbirds and invited us for a visit. They live south of Tampa from December to March-ish so we are flying in and out of Tampa with a mega road trip through the state. I also have a friend in Jacksonville, so I am looking forward to seeing her and soon basking in some sun.

FlamingBirthdayCake1Birthday #59

This week, I will be 59. Geez. Creepy. Although, I’m truly lucky to have lived to be 59. Part of me wants to have a huge party and another part of me wants to roll into a corner with a candle  and a chocolate cake. I’ve always wanted a “garden” party, but a Chicago January is not the time to host an outdoor party. Then I thought maybe I’d have a 59-1/2 year party. After all, that’s an age when one can start eying those retirement funds, but that would encroach on my daughters’ birthdays, which both land in July. Plus, my oldest will be 40, which actually makes me feel older than being 60!  😛

I think I’ll save the party for the big 6-0 and settle for the chocolate cake.

Considering it took me a few weeks to gather up this much to say, I think my days are winter-slow. Oh sure, I have stuff to do. We finally cleaned up the holiday tree and ornaments, but the frenzy is over and it’s sort of quiet. I have learned to appreciate that.

Stay warm. Have fun. Thanks for reading!

Read Full Post | Make a Comment ( 5 so far )

Holidays, Move Along Now

Posted on January 14, 2013. Filed under: Cancer, Family, Just fun! |

The past weeks have had that hectic layer of holiday chaos and my blog is sniffling from neglect. Don’t get me wrong: I LOVE CHRISTMAS…decorating trees, buying gifts, forgetting that I already bought a gift and buying another one, getting everyone together, luscious treats and grandkids make it extra special. I’ll also admit that this past year has made me appreciate “corny.” Even Scott hasn’t been ready to take down the tree. If we leave it up any longer, I think he should turn in his Bah Hum Bug pillow. I also love New Years! I’ve never fallen asleep before midnight. This year, we went to my daughter’s house for a wonderful party. Now I’m ready to get back to “real life.”

No One Answers the Phone Anymore  😦
I swore I would continue a traditional a friend and I started about a decade ago. (Could it be a decade!) Dateless, unless you count dinner with her 80-something dad, we gathered in her living room armed with alcohol and decided to call strangers in area codes where it was midnight and wish them happy new year. Since we were on the East Coast, we started with 212s in NYC. We spoke with a group who’d just come in from jogging in Central Park. We woke up some people, but most of them didn’t mind. We left messages on office voicemails. Many were delighted to wish us a Happy New Year in return. Some thought we were drunk, but we assured them that, although we were enjoying our holiday, our greeting was not alcohol-inspired. I don’t think we ever got to the West Coast, but it was a heartwarming experience and one that I think should become a tradition.

This year, I retreated from the party to make some calls to NYC at 11. NO ONE ANSWERED. Plus, it was difficult to even get working numbers. I did leave several Happy New Year voicemails, but it was not as gratifying as past years. I think I called about 15 or 20 numbers. Nothing. My grandson found me and asked what I was doing. I explained the tradition. His eyes grew bigger and he said, “I wanna do that.” I was done by then. Next year, I’ll figure out how to at least find working numbers—and I invite everyone reading this to do the same.

The New Do
OK…after months of scarves, because I never got into the wigs, I’ve decided to keep my short, dark hair at least for 20130111_201312awhile. I even got it trimmed already. It’s very thick and has a bit of a wave to it, which is very different from the straight blondish, shoulder-length hair I had before.

I’m not sure what color it will be in another year, but, from what I hear, the straight hair should eventually return.

A Post with Teeth in It
Last time I wrote, I reported a broken tooth. I finally got in to see the dentist who pulled out part of the cracked tooth. Gross. Tomorrow, I go back to the dentist can refill/rebuild the part that came out. If not, it’s root canal time. It’s a back molar, so it’s not very noticeable, but I’ve always been a bit of a dental-phobe. In short, I have less anxiety at the gynecologist than at the dental office. It’s all about the sounds.

May we all have a fabulously LUCKY 2013.

Read Full Post | Make a Comment ( 4 so far )

Paint Christmas Fun. Paint 2012 ???…Oh, Let’s Just Paint Over It.

Posted on December 29, 2012. Filed under: Art, Cancer, Family, Just fun! |

So much to say and so little time! For a Buddhist, I have way too much enthusiasm for Christmas. I guess it speaks to the four-year old in me and the peace-on-earth speaks to the Buddhist. My in-laws from Texas joined us at my daughter’s home for Christmas brunch. They showed determination in attending the festivities. Their flight from AuIMG_6778stin was cancelled due to bogus reports of bad weather hitting Chicago. Never happened. They had to detour to Dallas, then spend the night in St. Louis before flying on to Chicago. Their luggage decided to take another route and didn’t show up until two days later.  In spite of it all, we had a wonderful visit. And it’s even more special when there are kids around to enjoy it too.

IMG_6782This year, I had time to make some items and I am proud to say the majority of gifts were homemade, or purchased at independent retailers or from artists.One of the gifts was a painting I did for my daughter. She doesn’t have any of my art, so I thought a painting of the building where she was born would be appropriate. It’s a large court building in Rogers Park. Yes, she was born at home with a doctor and nurse in attendance. Hey, it was the 70s.

Anyway, this building presented a challenge because every unit has a sunroom jutting into the courtyard, which is a perspective nightmare. I could have worked on it for another 10 hours adding detail, but you have to stop sometime and Christmas Eve was a pretty good time.

On the Healthfront
Today, after two months and four rounds of Atra, I visited Dr. G. Since I’ve only been able to be in a vertical position three to five hours a day, I planned to lobby for two weeks off between pills instead of one. This horizontal demise may be a surprising because people see me out and about looking all pulled together, but what people don’t know is that I go home and bury myself in the sofa or lay in bed. My mile walks are a distant memory. I’ve got NO energy and I’m achy all over much of the time. Because inaction begets inaction, I thought spreading out the doses of Atra might give me more recoup time. Plus, my second opinion doctor informed me that the “normal” regimen is one week a month, not the two I had been prescribed. Happily, Dr. G. saw the need to ease up and changed the regimen to one week a month. WhooHoo. I might even have a glass of brandy during my treatment sabbaticals.

Meanwhile, I cracked a tooth! I was chewing something and noticed something hard. I took it out and just thought it was a bone or something in the food. Now it definitely feels as if something is very wrong. And the dentist can’t see me for a week. Perhaps I will lose some weight because it is not easy to eat on the left side. Is there no reprieve from more doctor visits!!!!

Stay tuned for a hair update. I must take a photo and show you. If I’m not back by New Years, have a great one.

Read Full Post | Make a Comment ( 4 so far )

Duck the Halls

Posted on December 2, 2012. Filed under: Cancer, Family, Just fun! | Tags: , , , , , , |

There’s a nifty path on the east side of the Chicago River between Montrose and Irving Park. It’s not easy to find, but once20121201_223130 you’re there, you forget that you’re in the Chicago. A thin path of mulch lines the ridge and dips to the river’s edge in several spots. Grasses stand three feet high on both sides of the path and are dotted with a rainbow of colors in the summer. Trees lean into the water. Some of their branches touch the surface. Walking along the river, you are apt to spot a crested white duck comfortably hanging out with the mallards. Wikipedia says it is a mutant mallard.

On a whim, Saturday we invited the grandkids and my mother-in-law to come over and help us decorate our Christmas tree, but the balmy fall day was so nice we added a walk along the river with the grandkids to the day’s agenda. When we returned, we finished decorating the tree. I’m a sucker for Christmas. It was great.

crested white duckAlyssa got in trouble with me for suggesting the duck’s headdress looked like a grandma due to its bonnet. While that’s quite true, I would be lucky to have such a hairdo, and I don’t easily identify with the stereotypical grandma. Alyssa qualified her comment by referencing a cartoon grandma. Enough said. The afternoon gave their mom and dad an opportunity to do a little holiday shopping. Fun.

Read Full Post | Make a Comment ( 3 so far )

Visiting the Maintenance Man

Posted on December 2, 2012. Filed under: Cancer | Tags: , , , |

The holiday decorations are emerging and I’m feeling that it’s weird to go to the Cancer Center when it’s cold. Definitely reminds me that I’ve spent a good deal of this year dealing with this leukemia thing. This week, I had an appointment with Dr. G, the first meeting since I’ve been on “maintenance.”

Maintenance is the long-term drug regimen that is supposed to keep the leukemia cooties from returning. Rather than a janitorial activity, it’s more like when you have your home exterminated, but the exterminators return every month to keep it bug-free.

I was very open with Dr. G about getting a second opinion from Dr. V, who basically thought Dr. G’s approach was fine. My understanding was that the plan was a condensed version of the “usual plan” because I could tolerate the drugs so well. The side effects made me wonder if I should. That was my primary thought as Scott and I found a parking place in the crowded Kellogg Cancer Center mini-lot.

Once my blood test numbers were in, we met with Dr. G who threw a curve ball. He was excited about returning from a recent conference. Apparently, there was much discussion about how MY goofy brand of leukemia should be treated. Some docs saw no need for any maintenance when the patient’s bone marrow biopsy was clear at a molecular level, which mine was. Others liked the three meds for two years. Dr. G. thought that maybe he could be a little less aggressive than originally planned.

Given my side effects—which now include itchy, scaly patches of skin on my back and arms, along with mega-fatigue and a bunch of lesser issues—he dropped two of the prescriptions! He left ATRA in the mix, which is a mega-dose of vitamin A. As planned, I will take 10 pills a day for 7 days every other week for a year. We’ll see what that brings.

I’ve written before that I always suspected I’d be hit with a health challenge in my 50s. So far, I beat breast cancer, leukemia (hand me that wood chopping block to knock on) and I’ll be 59 in January. If I can get to 60 in 2014, I’ll be good for a couple of decades at least. I know this just like I knew something would hit me in my 50s. For this reason, I’m comfortable with some form of maintenance and might even ask Dr. G to drag it out until I hit 60. They say things come in threes. Hopefully, not this time!

Read Full Post | Make a Comment ( 4 so far )

My Top 10 Things of Thanks

Posted on November 23, 2012. Filed under: Art, Cancer, Family, Just fun! |

In no particular order because you can’t compare the Taj Mahal and the Grand Canyon:

A husband whose strength, love and attention made my year easier.

Daughters who put their best selves into their lives.

The family and friends who care, make me laugh, inspire me to feel valued and give me things to look forward to.

Voters who think.

Funky medicines that kill cooties and doctors who know what they are.

I still have money in the bank.

A beautiful warm fall.

The gift of strength and fortitude.

A creative community that rocks.

Precooked Thanksgiving dinners that include a turkey, 4 sides and rolls for 6 to 8 people.

May everyone have as much to be thankful for as I do. Happy Thanksgiving!

Read Full Post | Make a Comment ( 4 so far )

A Taste of the Old Normal—Sweet!

Posted on November 21, 2012. Filed under: Cancer |

In cancer circles, expressed frustrations are met with, “You have to get used to the new normal.” Ugh. I want my old normal and last week I was busy achieving it.

The seeds were planted several weeks ago when Ed, my art teacher told us about an artist who was to have a show at his studio. He was in Chicago for a reading because he’d submitted some stories to a journal and they were selected. I asked what journal and he said it was the Fifth Wednesday Journal. Wow. I designed a program and a flyer for them last winter for an event at the Poetry Foundation. I worked with the founder, Vern Miller. I shared that with Ed. Another small world story.

Meanwhile, I reconnected with Vern and told him I’d learned of Philip Sultz, the artist/writer. He invited me to come to the reading at a nearby bookstore, and I figured I’d try to make it. I also proceeded to submit some poems to Fifth Wednesday, as I’d been promising myself I was going to do for quite awhile.

The gallery show last Thursday was great with lots of interesting work and people. I spoke with Sultz and was impressed. He was studying at Cranbrook when I was in diapers. He’s had many shows throughout his life and the writing is a new thing. The next evening we headed for the Book Cellar for the reading. I took Scott for many reasons, but mostly because I thought he might like it. We walked there which counted for my exercise for the day. Sultz’ stories were pure fun, short reminisces about a guy who’s a little rough around the edges. Scott enjoyed it and I had a chance to reconnect with some writers and poets I haven’t seen lately.

Then came an invitation to join a friend at the armory on Broadway for a craft fair on Saturday. I was feeling a little trepidation about being up for that long without a break, but I did it. Maybe I’m being too cautious? Anyway, it was great fun and creatively a little kick in the butt. We topped off the event with an authentic alcoholic drink across the street. OMG… I can count on one hand the number of drinks I’ve had this year and this one was luscious. Amaretto, cider, cinnamon and who knows what else! I’m told I shouldn’t drink, but sometimes you just have to not give a damn.

That night, Scott and I chased a movie called Chasing Ice, a documentary about a guy who placed cameras around the arctic to document the disappearance of glaciers. Beautiful photography and documentation of global warming effects. Of course I went to the Mill on Sunday, but not until later. I had a little recouping to do.

See, I’m not trying to get back to extreme sports, just the rich and stimulating life I’ve become accustomed to. I guess I’ve become like an electric car: I can run, but I need more juicing up between trips. Good enough.

Read Full Post | Make a Comment ( 2 so far )

The Second Opinion about the Third Step

Posted on November 20, 2012. Filed under: Cancer | Tags: , , , |

Last Monday, Scott and I drove down to Rush University Hospital. Hmmm…I just remembered that I was born there!) Anyway, we met with Dr. Venugopal, a major honcho in leukemia research, for a second opinion about the need for the three ass-kicking drugs I am to take for a year. When I googled the protocols, they were all over the place—from no meds at all for low risk of recurrence, which I was told I was, to two years of meds. I figured a second opinion was in order.

I found Dr. Venugopal through my art instructor’s friend’s wife, (got that?) who works at Rush. He was delightful and informative. He seconded my doc with an explanation: I’m not really low risk for recurrence, so some meds should be in order. He said the primary indicator, which is based on specific levels when diagnosed DOES put me in the low risk category. But the secondary factor puts me in the intermediate risk category. Also, patients usually get drugs for two years, but since I “tolerate” them so well, they increased the dosage and condensed the duration to one year.

Hmmmm… Just because I can stand them, doesn’t mean I should. I’ve been feeling REALLY tired and plugging along. I’m getting skin rashes, extreme dry lips, shaky hands that occasionally cause minor catastrophes (like spilling my FILLED old lady pill tray on the floor). A couple days ago my face started twitching intermittently. SO, next step is to talk to Dr. G about decreasing the doses and going with the two-year plan. If I could feel better, I wouldn’t be opposed, although the light at the end of the tunnel would be longer. Maybe it wouldn’t make a difference anyway…to be discussed at my next doctor appointment next week in Evanston.

It felt good to know my doc was on the right road, and respected by Dr. Veno, but it would have been nice to hear alternatives earlier on. They always ask if I have questions, but mostly I don’t know what questions I should ask. The other good thing was realizing what a pain it would have been to trudge to Rush for treatments on an ongoing basis. I’m much more happy driving up and parking in Evanston.

Read Full Post | Make a Comment ( 2 so far )

Methotrexate—Who seconds that???!

Posted on November 11, 2012. Filed under: Cancer | Tags: , , , |

So… last Sunday I loaded up the old lady pill organizer with my wad o’ pills for the week. Amazingly, they fit in the little compartments!  After seven days, I haven’t grown any new limbs or turned purple, so hopefully, I am able to manage them. I have noticed an increase in fatigue and I’m going through lip balm like I did on my 30-day hospital sabbatical. Yes, I am calling it a sabbatical.

After dealing with a 1 in a 100 chance of getting leukemia and then getting the rare brand, I’m starting to feel that if something is labeled “low risk” it also has my name on it. So when I read the list of side effects like “other cancers,” I’m concerned about being over-medicated. Then again, I’m also concerned about not being medicated enough. Googling doesn’t help. There are more protocols for this type of leukemia than recipes for chicken soup. It seemed to me that it was time for a second opinion and maybe even a consultation with a good Tarot reader.

Anyway, while bitching about the meds to my art class, my art instructor mentioned that he knew someone who might be able to facilitate a second opinion from a doc at Rush. By the following afternoon, I had an appointment for November 11. By the time you read this, I will have filled out the seven preliminary pages and maybe even watched a doc furl his brow. I suspect the second opinion may be the same as the first, but what the hell, my deductible was met back in March, so why not talk to someone else. Maybe even make it two out of three???

Just because I wasn’t at the cancer center this week doesn’t mean I didn’t have my share of doc drama. In 2011, I booked a mammogram for last Monday. That came out fine. YAY! On Wednesday, I had a doctor appointment for an annual physical. I’d booked that appointment for September, which I rescheduled since I was having my blood checked several times a week then. It seemed pretty ludicrous. Not that I thought anything had drastically changed since I saw Dr. G two weeks ago, but he’s not doing PAP tests or looking down my throat once in awhile, so I felt a little better knowing someone was paying attention to the rest of me. I LOVE Dr. R. She’s the one who called me weekly to check in when I was on my “sabbatical.” She supports alternative therapies, such as Reiki and acupuncture, and she spends A LOT of time learning about my life. A LOT.

So I’ll let you know what treatment the committee comes up with. Hmmm…treatment by committee sounds a little scary.

Read Full Post | Make a Comment ( 3 so far )

Special Effects, Cattails and Other Happy Memories

Posted on November 11, 2012. Filed under: Cancer |

I’m overdue for an update, so I thought I’d cover the highlights of the past couple weeks in two posts. I’ll start with last weekend, before the bag o’ meds. And, since the date is no longer as relevant as a title, I’m scrapping dates in titles to save myself from rubbing my nose in my own tardiness.

Last weekend, since Scott and I were invited to a friend’s annual “Special Effects” party in Elgin, we decided to make a weekend of it and stay in a hotel there. (We are SO overdue for a getaway!!!!)

We chose to stay at the Country Inn off the highway for the pool, free breakfast, internet access etc., etc. But first we explored downtown Elgin and wound up at the Elgin History Museum. It was in an old mansion. Two very old women came out of the woodwork at the sound of the front door opening. They looked like something out of a Nathaniel Hawthorne novel and took very tiny slow steps. They saw so little traffic, they admitted that they’d forgotten how to print us a $3 receipt for our admission, yet insisted we hang in there until the two nailed it. The museum showed a huge obligatory tribute to Elgin watches on the second floor complete with ads from the 60s. The display explained that the advent of battery watches brought the company to a dismal end. Apparently, a scout’s headquarters was in the area because the organization was well-represented. When we headed out the door, the two, dare I say docents, gathered up their newsletters and other flyers to make sure we had all the info we’d ever need. Before we headed for the party, we also went to Jimmy’s Steakhouse and split a steak dinner. Fun.

Now for the special effects party…Our Elgin friends, who are more famous for their salon gatherings than the annual special effects party, are no strangers to the strange and they have about an acre of land to be strange on. With their ingenuity, and that of their other friends, cool things happen. There are always thrift store microwaves to load with an array of items not traditionally thought of as microwaveable. This means blowing up marshmallow peeps, glow sticks, Ivory soap, eggs and various other household items though not together. Most of the time, the door will blow open if you wait long enough. Sometimes, flames are involved. Sometimes, five-foot high flames wisp into the night sky, which is why the microwaves are lined up in the yard.

Then there’s the bomb fire. In an ode to summer, much of it was made out of eight-foot sunflower stalks, and it was about six feet wide. When you surround it with box fans positioned at an angle, the flames are pushed into a hurricane shape. Very cool. The night is usually crowned with sky lanterns lit by 30 people in rapid succession, so the lanterns leave a trail across the sky. It’s breathtaking. In between these events you may find everything from shadow puppets to lasers.

On Sunday, a hike in a forest preserve was on the agenda, so we asked the big guy at the desk who looked outdoorsy where we might find a nice trail. He directed us slightly west, which turned out to be a beautiful area. I can’t remember the last time I saw cattails! This was my last day before starting the meds so I wanted to push myself as much as possible because I didn’t know how crappy I might feel later. We walked a few miles on the trail before I pooped out.

On the return route we also ventured  to IKEA in search of the perfect sofa. They had a few options, but none topped one of my previous discoveries. This detour was more about leaving no sofa possibility unturned than it was about shopping at IKEA, so given the density of the Sunday afternoon crowd, it soon became annoying, although I enjoyed encountering into a former client and current friend who was also braving the retail odyssey.

All in all, it was great just to see something different—and we returned in time for me to take a little rest before going to the poetry slam.

Read Full Post | Make a Comment ( 2 so far )

Tuesday, October 30, 2012 Dreaded Meds

Posted on October 30, 2012. Filed under: Cancer | Tags: , , |

While the superstorm, Sandy was pounding the East Coast, I lay in bed and noticed an email with my test results from the bone marrow biopsy. I debated peeking at it just before trying to go to sleep, but I couldn’t resist and I expected it would be clear….and it was. No evidence of cooties. Yay.

However, I realize I am facing the next step, maintenance, with trepidation. I finally got the guts to Google one of my meds, tretinoin, which I’ve been on before, so I know I can tolerate it even though one report said some people die from it causing liver failure etc. I wanted to get a sense of protocols, but the reports are all over the place. Some say I’m supposed to be on two meds for six months. NIH says you shouldn’t be on tretinoin for more than 90 days. Others say three different meds for a year, which seems way too long. I FINALLY found where Dr. G got his protocols from, which was the Leukemia and Lymphoma Society—although it spends NO money on researching APL because so few people get it.

http://www.lls.org/#/diseaseinformation/leukemia/acutemyeloidleukemia/treatment/apl/

 I find it disturbing that they suggest two years of drugs for optimal effect. Dr. G said a year, but maybe he’s just protecting me. I’m trying to work up the guts to look up the other two drugs now which are mercaptopurine (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000737/  100 mg in two capsules every day) and methotrexate (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000547/  30 mg/16 pills once a week). The tretenoin is 5 pills 12 hours apart for a week and then a week off…for a year. All cause hair loss, so I don’t know when I’ll see my hair grow again. We are making a checklist to keep track. Don’t worry…I already have the old-lady plastic pill carrier with the days of the week on it. I’m sure there will be periodic bone marrow biopsies.

Although whatever info I find will say that the risk for horrid side effects is low, that doesn’t seem to be the way I roll. Most people are incapacitated by chemo, while I was fairly functional. Most people don’t get leukemia from radiation, but I did. Most people don’t get APL, but I did. That phrase “low risk” is not very comforting. Well, Monday I start shoveling pills in my mouth. Before that, I will spend several hours cringing at side-effect lists. Or maybe I should just wolf ’em down and see what happens.

On the bright side, After three years of popping daily Allegra I haven’t had an allergy pill since spring and I have yet to get one of those annoying sinus infections that used to frequent my head. Plus, I started eating tomatoes and bread again and don’t seem to have any sniffles. Cool.

Onward.

This morning Scott and I ventured to the lake to see the big waves we’d heard about. The radio said some streets were closed because of them. We were somewhat disappointed. While the waves were pretty big, they weren’t all that impressive. But it was freezing out there! Maybe Sandy’s effects have yet to hit the Midwest. Luckily, Veronica is arriving home today from the East coast. I can’t wait to hear her first-hand account of life on Virginia Beach.

This afternoon, I submitted some poems to a literary journal which has been on my list of things to do for way to long.

Also, I had to go to the bank so I bundled up and Scott and I walked the two miles. Not bad.  As you can see, I’m in a bit of a funk and he is being awesomely sweet.

Read Full Post | Make a Comment ( 6 so far )

Sunday, October 28, 2012

Posted on October 29, 2012. Filed under: Cancer, Family, Just fun!, Poems |

Yesterday, I redefined “tired” and slept almost all afternoon. Later, we went to a great Halloween party and I still went to sleep when we got home. The party was a hoot with an

I look like I have something growing out of my head.

assortment of creative costumes from Big Boy to the 50 Shades of Jennifer Gray. Fun!  While Scott was “safari guy” last week, this week he was Indiana Jones. Same costume, different name.

Meanwhile, Veronica went to Virginia Beach earlier in the week for her friend’s wedding. Unfortunately, hurricane Sandy crashed the wedding. From Veronica’s intermittent texts, it seems she moved to a large beach house. The police came by and told them they’d let them know if they need to evacuate. Mom that I am, I have been Googling the area for weather updates and local webcams. I’m not counting on her coming home on Tuesday as planned. Halloween just became a little scarier.

Another friend is in Hawaii where they just cancelled a tsunami warning. Tomorrow, they expect 20 foot waves on Lake Michigan. Wild weather everywhere!

This afternoon, I ventured to the Rhino Poetry Forum for a workshop led by an awesome poet, Laura Dixon. There, I gained a new appreciation for the kind of poems that seem to be written in another language, except the words are in English.  I brought a poem of my own for comments and wasn’t disappointed. I’m planning on placing it in a painting and needed some objective thoughts before permanently installing the text. I had planned to come home, do a few chores and hit the Mill, but time got away from me and I ended up crossing a few things off my “to-do” list instead– including this blog update… I hope I don’t have poetry withdrawal later in the week.

Read Full Post | Make a Comment ( 1 so far )

Friday, October 26, 2012

Posted on October 27, 2012. Filed under: Art, Cancer, Family, Just fun! |

Veronica, me and Christy

Outrageous Penny

Fun First
I’ve never been into dressing up for Halloween. I do enough masquerading in real life. However, my daughter and her husband always have a huge Halloween party. Costumes are mandatory. This year, I was at a loss for ideas. I took my son-in-law’s suggestion to leverage by hair situation and be a Buddhist monk. I bought a few yards of crimson fabric, rummaged for my old Buddhist paraphernalia that I actually used to use. I added a little incense.It worked. Scott has his safari guy costume he dusts off every year. Even my mother-in-law put together a great outfit accented with a T-shirt that said, “Outrageous Old Woman.”

This year, the party was bigger than last year. To my surprise, Christy let loose and was the character from Flash Dance. She recreated the famous dance with the chair and had her husband douse her with water. She wasn’t even drunk! Her neighbors danced as Milli Vanilli and the children choreographed something that could have been from Saturday Night Fever. The party is timed between the grandkids’ birthdays, so there’s also a orgy of gift opening, cake and everything birthday. Very fun.

Work and little, Rest a little, Play a little…
I have been plodding along with blood tests and IV chemo treatments that exacerbated my fatigue and chemo brain. The hardest part is feeling insecure about planning because I don’t know exactly how much energy I will have at any given point. Most of the time I just keep putting one foot in front of the other and move forward.

Scott and I got out to see the movie Searching for Sugar Man. It’s a documentary about a Detroit musician from the 1970s who rivaled Bob Dylan with his talent and is credited with fueling the end of apartheid in South Africa. Rumors said he was dead, but two journalists set out to find out for sure. The story is truly spectacular and portrays someone who truly was able to shed desire and live pretty peacefully. Unlike a lot of women who tear up during chick flicks, I spent the last half of the movie almost sobbing. It was that inspiring—a great message about dignity, being oneself and living in contentment. See it if you can.

Painting My Way to Publishing
I finally finished two “poem-paintings.” One has been waiting for the poem for some time. The other is the sunflower    one I showed in a previous post, but now has      the poem in it. I’m going to incorporate these into my poetry book manuscript. I’d like to get my book printed by my birthday. I think I’ll just publish it myself through Amazon. Traditional publishers keep most of the money and send you off to do your own marketing. You may as well self-publish and keep the money if you have to do all the marketing anyway.

In a recent class, I expressed in interest in painting with Gauche watercolors, which are more opaque than watercolors. My instructor suggested I do a version of a Homer Winslow painting that is a good example of using Gauche. I did it and surprised myself. (above)  I recall going to see a huge exhibit of his at the Art Institute and feeling a little like the style was very do-able. It’s not really my style, but it was fun to paint and resulted in a better piece than I expected. Cool.

Just Your Run-of-the-Mill Dental Appointment
It’s no fair that a cancer diagnosis doesn’t wipe out the possibilities of getting the flu, stubbing your toes or going to the dentist. I’m usually pretty good about the

sixth-month cleaning, but with all the immune system ups-and-downs, I haven’t seen the dentist or hygienist in over a year. My teeth have been so far down on my to-do list that my friend, Jane had to remind me that I chipped a tooth when I was in the hospital. I had totally forgotten, but I reported in my blog. So, yesterday I ventured to the dentist, who is also in Evanston. It was delig

htful to have a plain old appointment that didn’t involve surgery, poison or radiation. I’d made up my mind to skip X-rays unless I had a problem. I’ve had enough radiation to last a lifetime. That turned out not to be a problem, but a teeny cavity was discovered, so I’m back there next week. Still…just a plain old ordinary thing what doesn’t even require a scarf on my head.

The Not-so-Fun
About 10 days ago, I got the Picc line removed…YAY! I feel so much more FREEEEEEEE. The event was timely because the rubber device I use to cover it in the shower is falling apart.

Notice that the needle name starts with “jam.”

Now the “Consolidation Stage” of treatment is complete and my blood counts have left the roller coaster park for the interim. To celebrate, Dr. G had me come in for another bone marrow biopsy today. I HATE those. They promised me three milligrams of morphine, but I decided to enhance it with a Xanex and two Tylenols before I left the house. However, the drugs did almost nothing. Scott accompanied me, which was helpful. If I could still walk to the bathroom without weaving through the hallway, I’d say I’m not really out-of-it enough.

I didn’t have to wait long, which is the best thing that happened. They tell you that they go into the hip, but it is more like the top of your butt. I decided to go to my happy place. I envisioned a beautiful, rich forest with a cozy cabin. It was dusk and the cabin’s windows glowed with the fireplace inside. I imagined entering the cabin and sitting on a comfy sofa with a class of wine. Meanwhile, Dr. G is telling me the medication protocol to follow. Five pills in the morning. Five pills at night for two weeks. Sixteen pills once a week all at once. Two pills….He asks me if I got all that. I tell him, “No, I am in my happy place.” I think he just needed something to distract him from my moaning. The info would all be printed out for me anyway.

I am back in my happy place and suddenly, someone is drilling for oil outside my cabin window. I hear them hit rock. I try to imagine how great it is that they are looking for oil on my land except the house is shaking and they are hitting rock and jamming their huge pointy tool into the rock that wasn’t hurting anyone. For a moment it seems they are done, but no! They have to sample more rock and the drilling starts again. I can feel the tools scraping against the rock again and, after a few moans, I try to distract myself by looking at the fireplace, but the house is shaking and I want the drilling to stop. Suddenly, it’s over. Dr. G apologizes and promises more drugs next time.

After a few minutes of regaining my composure, I am told the results should be in on Tuesday. We all expect them to be clear.

We are sent to the pharmacy where my $3700 worth of pills are being loaded into little bottles. My insurance will reimburse me, but I have to put it on a credit card first. It’s always a nail-biter to juggle this transaction. I am told I will need to start these meds on November 5 and take them for a year. Have a purchased one of those old lady pill organizer with the days of the week on them? Why yes, I have. Now I need to peruse the list of side effects. Creepy… but then it IS Halloween season.

Read Full Post | Make a Comment ( 2 so far )

Saturday, October 6, 2012 Mug Shots and Chemo Saga

Posted on October 6, 2012. Filed under: Cancer | Tags: , , |

At 8:45 a.m. on Wednesday, I was off for blood work to prove my ability to withstand my first dose of my last cycle of this chemo drug, daunorubicin. About five minutes away from the hospital, I received a call from the nurse telling me that I needed to have a MUGA scan before I could resume chemo. It seems the MUGA scan determines if the chemo has caused my heart to skip a beat. Take my word, it hasn’t. I couldn’t remember ever having this test before, but they told me I had one in April. Go figure. How out of it was I back then? How out-of-it am I right now? Why isn’t this test called getting a MUG shot? Pay attention to the road, Emily. You have chemo brain.

The problem was, they couldn’t do the scan until 1 p.m., so they wanted to know if I wanted to stay home or come in for the blood work and wait out the interim. Since I was only five minutes away and was equipped with my netbook I figured I’d just come in for the blood work, hunker down in a corner with my computer, have lunch and pick it up from there. Hey, I’m flexible.

My plan proceeded as plan. I caught up on email, went to the café for lunch and checked in with the nuclear medicine receptionist, who I had earlier begged to let me know if an appointment opened up. She didn’t. The test would take about 1.5 hours. Fun.

The tech led me to a little room. He looked like the poster boy for Dweeb Awareness Month. Lanky. Glasses too big for his face. Out of control curly dark hair. Anyway, he explained what would go down because I couldn’t remember ever having this test last April. That still bothers me. Are they billing for bogus tests? I remember them checking for this anomaly, but not with this test. Weird.

Well, took two vials of blood and proceeded to add radioactive isotopes into the vials which would then be injected back into me after a thorough swishing. Of course, all the hazmat precautions where in order. While we waited 15 minutes for the blood to reach its destination, he asked what kind of music I liked because he would play anything I wanted during the scans. I told him I liked any kind of music for a half hour, except maybe rap for 15 minutes. Then we proceeded to the machine that looked pretty much like an MRI, but had flat panels emerge over my chest. There were to be three views that took about five minutes each with adjustment time between them.
The tech had obviously used my age and gender to select the music. I listened to Carole King, John Denver, James Taylor and other soft rockers from the 60s and 70s. Not terrible, but I would have been cool with just going to the happy place in my head. The tunes were a distraction, but at least they didn’t make me want to get up and dance, which would have been a sure deal with someone like Santana.

When he finished, he said they’d have the results by morning. I said that wouldn’t work because I needed the results for one of three chemo treatments over the next three days and waiting would go into Saturday when the Center is closed. He said he’d ask for a “wet read” which means “right away.” I learned the phrase is a throw-back to days when the scan really was on film and hadn’t yet dried. Cool.

When I was cut loose, I went back to the Infusion Center for the treatment. It is now almost 3 p.m. and the space is much quieter. What’s really interesting is that the nurses are more real. All that morning fresh cheer has worn off and one is bitching about her teenagers. I would never here this in the a.m. Then she apologized for being so negative. I replied that her attitude’s authenticity was refreshing. (She’s one of the most fake cheery nurses.) When the scan results cleared, she loaded me up with an IV of anti nausea meds and then injected the vial of daunorubicin after putting on her protective gear. I am feeling like a walking toxic waste dump. This drug makes you pee red, but I’ve only seen peachy colors. Maybe I’m sufficiently hydrated. Cool.

I reminded the nurse that this drug is supposed to be given 24 hours apart, so maybe my 9 a.m. appointment the next day wasn’t the best scheduling idea. She agreed and got Thursday and Friday changed to afternoon appointments, which they seem to

So… now I wait for more hair to fall out, more exhaustion and my immune system to crash, which usually happens in about 10 days. I’ve been through this before, so I’ll get through it again. No biggie.

What to be for Halloween?

We are invited to two Halloween parties. One is a huge family event at my daughter’s house and the other is at a friend’s. I asked my son-in-law who I could be that my current hairstyle might accommodate.I look like a middle-aged guy with a receding hairline.  He suggested a Buddhist monk. I like it. Not only is that my real spiritual leanings, it’s easy: three yards of cheapo orange polyester and prayer beads. I will post pics when I get it together.

Almost Finished the Sunflower Painting—Yay!
During my hiatus from posts, I finished my painting and am figuring out how to add the poem into the sky. It’s a poem that occurred to me in France while driving through the countryside and seeing the fields of sunflowers.

Not Unlike Sheep

A field of sunflowers —

where do they turn in the dark?

They do not lie down close to the night’s sky reach above or run

to seek sun.

Do they rely on the moon?

Forget their addiction to sunlight?

Strain light from stars?

Face each other in confusion?

Sleep, knowing a new day will dawn?

Surrender to darkness?

Whatever the answer,

they grow, rise, feed and die

with the seasons

grounded in green and yellow patchwork across the horizon

shedding seeds for generations.

* * *

There a lot of other events over the past two weeks that were wonderful and fun, but I feel the need to move on to more rather than report everything. I hope to keep a tighter, consistent rein on posting, but we’ll see. Thanks so much for continuing to read. i love to hear your comments too. The blog is set for me to review comments before they post, so if you comment and it doesn’t show up right away, it should soon. Thanks again and enjoy your weekend.

Read Full Post | Make a Comment ( 7 so far )

Saturday, September 22, 2012 Jupiter is in Crabby

Posted on September 23, 2012. Filed under: Cancer, Family, Just fun! | Tags: , , , |

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 )

Thursday, September 13, 2012 Peace, My Friends

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

Last week’s toxins have seeped into my cells and it’s time bloodwork and possible damage control. This involves a transfusion to replace anything that is dangerously lacking—i.e. white blood cells; red blood cells; platelets… hair implants, anyone? I started to feel better, but I’m not sure if I’ve been through the worst. We’ll see.

Now that I think about it, the worst is getting up for a 7:30 a.m. appointment. What are they thinking!? I’m supposed to have an unstressed life and they put early morn appointment times in my calendar! So I called the previous day and begged for a later time. I got a callback from the scheduler stating that “Nothing is available, but if you get there late, what can they do.” That statement was followed by a, “Don’t tell anyone I told you that.” I still managed to get there at 8 a.m.

When the numbers came back, everything was A-OK! No transfusion. My cells are all playing nicely in perfect harmony and so unlike the videos looping on every news channel. Cool.

Gumby Does Elmwood Park?
Scott and I came home and later went to a soiree held by a colleague of Scott’s. The man’s printing company was celebrating their 40th anniversary. We got a tour of the presses and watched the Pioneer Press photographer grab his photo op with the Mayor. There was a band, food and lots of giant plastic blow-up things. One of those was the 20-foot hollow Gumby-like guy whose flailing arms and body keep him dancin’ in the street. You’ve seen him. I love those guys. They’re so free and full of energy. How can there be any discord with one of those guys around??? Needless to say, even though the sky threatened rain, the event was very relaxing and peaceful.

Sonia Sanchez

But Wait, There’s More
I figured the afternoon festivities might put me under for the day, but I was wrong. In my “back pocket” was an email with details to an event at The Poetry Foundation.  The organization was featuring Sonia Sanchez, an incredible poet to truly understands the value of reading out loud. I was determined to go if I felt up to it. The poet’s father was a musician and Sonia grew up in Harlem. Each poem rolled off her lips like a jazz lyrics. She wrapped the audience with love and they felt it. She spoke of overcoming war by figuring out how to make it less profitable than peace. She gave away a book to a young woman who’d stood in line, to tell her how much she admired her work, but couldn’t afford to buy her book. She said we are all taught that justice is fighting back when it’s really about elevating the “enemy” to our level—not reducing ourselves to theirs. And when that seems difficult, we need to evolve. Plus, you gotta love a 78-year old woman with dreadlocks.

At the end of the day, peace had settled in every cell of my being.
Peace.

Read Full Post | Make a Comment ( 6 so far )

Monday, September 10, 2012 Take a hit of chemo…

Posted on September 10, 2012. Filed under: Cancer | Tags: , , , |

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.

 

Read Full Post | Make a Comment ( 5 so far )

September 5, 2012 Extreme Family Reunion… Before Chemo Returns

Posted on September 6, 2012. Filed under: Art, Cancer, Family, Just fun! | Tags: , , , , , , |

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 )

By Request

Posted on August 30, 2012. Filed under: Cancer | Tags: , , , |

A number of people have asked for the poem I wrote and read on Sunday. Here it is…

Next in Line
A True Story

The almost-boy at the register
in a red T-shirt with a bull’s eye
logo across his heart
pulls the diapers, batman pajamas
and hand sanitizer across the scanner
while the toddler in the cart grunts
and points for his new pacifier.

Next in line, a man in army fatigues
does not buy anything
does not return anything.
He wants to shoplift the almost-boy
in the red T-shirt with the bull’s eye,
who must ask a supervisor
to check out wine bottles,
but knows the difference
between video games and military maneuvers.

The recruiter bends over
the counter stiff and angled
presents an offer as if selling meth.
The almost-boy tells him
he makes enough money—for now.
In response, he’s told to think of his future.
The almost-boy says he is
planning for college
adds “Thanks, anyway.”
The man in fatigues spins
on his boot heel and marches out.

The almost-boy asks me to please wait
nods to a man in blue at the door
a badge on his heart
his hands on his hips.
The almost boy asks,
“Hey, if I’m to report solicitors,
do recruiters count?”

Security bolts through the exits
toward the Jeep in fatigues
idle in the no-stopping lane.

The almost-boy turns to me and asks,
“Did you find everything?
I lie , say “yes” and wonder
if the lines will ever end
if we’ll stop the need
for protection from protection
how many will check out
before there is peace in aisle six.

Read Full Post | Make a Comment ( 2 so far )

August 30, 2012 A Week of Comings and Goings

Posted on August 30, 2012. Filed under: Cancer | Tags: , , , , |

My energy level has actually been pretty good for a couple days. I have even written a few headlines here and there. Yesterday, I worked on a sketch of a new painting. In the afternoon, I went to Oak Park for the rendezvous with the mayor of the French town I stayed in on the arts exchange trip I took in 2003. I’ll say it: The only thing more difficult to plan than activities with someone who has a serious illness is planning activities with a group of out-of-towners. Both are like herding cats. Put them together and you’re lucky anything happens at all.

So…I told figured I’d jump into the French gathering late in the afternoon, so I wouldn’t wear myself out for babysitting the grandkids at 6:30. Likewise, the person managing the French couple got a late start, so they didn’t get to the dinner destination until about 30 minutes before I had to leave. M cooked up a wonderful dinner that we couldn’t wait for, but I enjoyed the visit nonetheless.

Instead, I had pizza with the grandkids, which I’m sure was equally amusing. They insisted on concocting a “Happy 13th Anniversary” banner after dinner, but with 20 characters and a school night bedtime, I made them take their showers first.

Then, we rounded up paper, scissors and markers. When the headlights fanned across the front lawn, lights inside went off and we hid behind the sofa, jumped out and screamed, “Happy Anniversary.” I felt like I was 8 again.

Yesterday, I had a burst of energy and decided to take the basket ball across the street to the courts. I made four baskets before I pooped out. When I got home, my face was bright red—and not from too much sun. Seems I’m out of shape. Who woulda thought! I’m trying to do as much as I can before next week when I get pumped up with toxins again.

Last night, my in-laws arrived from Australia. They are staying at my mother-in-law’s, but we will have dinner with them tonight. I am looking forward to it. Scott’s brother and sister-in-law arrives tomorrow for the holiday weekend. Today, I’m having lunch with Veronica.

Read Full Post | Make a Comment ( 1 so far )

Tuesday, August 28, 2012

Posted on August 28, 2012. Filed under: Cancer | Tags: , , , , |

Well, the good news on Friday propelled me into “normal” weekend activities that I spent yesterday recovering from. Well worth it though.

Scott took me out to one of our haunts for a Thai dinner on Friday. The highlight of Saturday was going off to Foster beach by myself and taking a swim! It was awesome. I arrived about noon and have to admit that it took much longer than usual to get used to the water. With all the hot days, I expected warmer, but eventually I talked myself out of being such a wimp and jumped in. I was up to my neck, swam along the shore and I could still see the sand at the bottom. Beautiful. I even took off my hat and scarf, let my new do show. I was careful to avoid the sun by using my towel as a tent. Some of the meds I have are not sun-friendly.

Another highlight was attending the Guild Complex fundraiser in Evanston. Great to hang out with respected poets and writers!  Scott didn’t join me because he had a horrible cold. I think his system finally rebelled under the pressures. On Sunday, we took it easy.

I finally organized all the papers hiding the top of my desk. I also finished a poem based on an experience I had at Target. A few months ago, a man in Army fatigues stood in line in front of me and tried to recruit the cashier, who wasn’t old enough to check out alcohol by himself. It was creepy. Luckily, the BOY wasn’t buying and was perfectly happy to make change and bag diapers. I read the poem at the Mill Sunday night and was rewarded with extended applause. Nice. It’s great to have new work. My brother, here from Dubai, arrived late so he didn’t see me perform, but we had fun after the show when Marc teased him about being a terrorist.

Yesterday, Scott and I went for a mile and a half walk down the river and back through the park. My left heel is killing me, like I have a bone spur or something, but if I have to make one more doc appointment, I’m going to scream! Scott suggested some Dr. Scholls orthodics that you can get after standing on a machine in the drug store. Pretty weird, but he said they’re working for him. I might try that.

By late afternoon I was back in bed. Guess I pooped myself out. Today, I’m still dragging, but later am meeting the mayor of a French town I stayed in back in 2002 during a Sister Cities exchange. I look forward to returning. Then I’m babysitting my grandchildren. Meanwhile, I’m in low gear, but determined to go for another walk. I always say, “You can feel like crap and sit feeling miserable, or you can feel like crap and force yourself to do things that help you forget you feel like crap.” Take that, side effects!

Read Full Post | Make a Comment ( 6 so far )

Friday, August 24, 2012

Posted on August 24, 2012. Filed under: Cancer | Tags: , |

The first results are in and there’s no evidence of APL leukemia cooties from my bone marrow biopsy on Wednesday. Yay! I still have to go back for two rounds of chemo (one week each with four weeks off in between). They expect my numbers to go wacky, so I will have to go in for two weekly blood tests and I might need more transfusions. Still not a bad deal.

Had a nice lunch today with M. He always gets me back on my creative track. I realize I need to be more disciplined. With clients, I find deadlines motivating. With my own work? Not so much. Right now, I’m going to have a fun weekend. You do the same.

Read Full Post | Make a Comment ( 7 so far )

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.

Colleen

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.

Read Full Post | Make a Comment ( None so far )

Friday, August 17, 2012 Time for Things to Come Together

Posted on August 22, 2012. Filed under: Cancer | Tags: , , , |

Yahooooo! I’m sitting in the merry-go-round room for my final drip in this cycle. Today, I get the picc line removed and two weeks without treatment!!! I can’t wait. Next Wednesday I’ll have another bone marrow biopsy and they expect the results to be clear of leukemia cooties. If not, I’m looking at more treatment??? We will cross that bridge when we come to it and, until then, remain in ignorant bliss and attracting positive vibes.

Speaking of coming together, my brother has arrived for a visit from Dubai via Boston and DC. He’s staying in my studio and goes about his agenda. Last night, we dined on homemade Iranian food his friend in DC made for us. It was wonderful. My childhood friend, Pam is also in town to see her new grandson and we are getting together this afternoon. Tomorrow, Diane has a little reunion luncheon in honor of her birthday. On Monday, the old crowd will be dining with Colleen who is in town from the East coast. It will be great to get together with everyone.

Meanwhile, other things need to be put back together…because they are falling apart. When I leave the merry-go-round room today, I hope my car starts. When I was exiting the garage today, I had to start it three times before it kicked on. I have a new battery and I can hear the click of it trying to turn over. Seems to me, it’s the alternator or starter. I am going to bring it directly to the dealer where my awesome Hyundai warranty should cover it. Back at the ranch, Scott is working on returning the patio umbrellas we purchased. We’ve had to replace two parts due to wind within one month. They were obviously not made for Chicago. Bummer. The dishwasher is broadcasting scary messages on the front. And my purse from Target is going back. First the zipper broke. Now the handles are tearing off. Yes, I carry a lot in it, but a big purse should be able to handle it. Bummer. I wish things worked the way they are supposed to–especially my body!

Read Full Post | Make a Comment ( 2 so far )

Tuesday, August 12 2012

Posted on August 17, 2012. Filed under: Cancer | Tags: , , , |

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

Posted on August 14, 2012. Filed under: Cancer | Tags: , , , , |

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 )

Friday, August 3, 2012 See Ai Wei Wei: Never Sorry

Posted on August 8, 2012. Filed under: Art, Cancer, Just fun!, Poems |

It was a busy week. I reached “Hump Day” in my five weeks of treatment. Scott and I needed a date night. I LOVE movies, so I did a little research and we decided to see Ai Wei Wei: Never Sorry, a documentary on the Chinese artist/activist, Ai Wei Wei. After the devastating earthquake in western China, the artist was appalled that the government did so little to document the loss, especially of 5000+ children. He went to the area and started collecting children’s names with dozens of other people there helping him. The government wasn’t too happy about that, but since Ai had been a leading consultant in designing the Bird’s Nest building for the Olympics, they clenched their teeth and didn’t hassle him too much. That changed when he became more outspoken.

We went to China in 2009. I loved it in spite of its oppressive government. However, I think the rulers are losing control, especially in the wake of their new-found materialism and social media/international connectedness. They simply can’t control the volume of people and growing voices. It didn’t even seem that the average person took the government very seriously.

The movie showed an installation Ai created for the Tate Museum: 100,000,000 porcelain stones hand painted to be sunflower seeds by Chinese works. The Tate included 80,000,000 in the exhibit and kept the rest to fill in space when visitors take them.

The massive room is nearly wall-to-wall with porcelain sunflower seeds.

The best part is that I really identified with the power and grace Ai puts into his work. Instead of a huge ego, his power comes from a grounded no-nonsense belief in humanity and transparency. How to “up my artistic game,” to make my work more meaningful to me by communicating my own sensibilities without throwing visual tantrums, has been itching in my brain. Best of all, the film inspired two visions of paintings for poems that do exactly that. This is a new twist I am really excited about. Stay tuned.

Read Full Post | Make a Comment ( 5 so far )

Tuesday, August 8, 2012 I flunked my EKG!

Posted on August 8, 2012. Filed under: Cancer | Tags: , , |

I am sitting in the merry-go-round room waiting for a green light to resume treatment. On Monday, I flunked my EKG with a QT score of 503 (500 is the ceiling), which was caused by the arsenic. The higher score can cause arrhythmia, so they are being cautious. There is no low threshold. It took four hours on Monday for the team to decide that I needed to skip treatment for two days, for a measly three points—but skipping was fine with me.

The fun part was that during the wait I bonded with two women from Gurnee. They were my age and one was in treatment for breast cancer. As I was leaving, the social worker stopped to say, “hi.”  She noted that it was nice to see I’d run into some friends. I told her that I’d just met them in the waiting room. She thought I’d known them for years. “Everywhere you go, there’s a party!” she said. Hmmm…how can I leverage that into cash???

Not having treatment for four days left me feeling GREAT! My energy level was up. My head was feeling positive and in control. Yesterday, I didn’t have to get up early, although now I am automatically waking early. I got some work done. I asked if the break was like a snow day that required a makeup day at the end. The nurse said it wasn’t. That’s good and bad: yay for the break; bummer for the less-than-total treatment.

Over the weekend, Scott and I gathered more “merchandise” for our impending garage sale. Stoneware dishes, anyone? A neighbor asked to rent our parking lot and Scott said she could have it for free if we could contribute stuff to the cause. Not sure she knew what she was getting into.

Yesterday, C came by with awesome Ecuadorian soup for lunch. We sat on the patio and although it was pretty warm, it was bearable. By evening, I went to my breast cancer support group.

So now I am back—and the QT score is down to 494, so we are waiting for the doctor to press the “go” button…Yay, he just pressed “go.” I did not drive to Evanston for nothing.

Read Full Post | Make a Comment ( 4 so far )

Thursday, August 2, 2012: Maintaining Coolness

Posted on August 2, 2012. Filed under: Art, Cancer, Just fun! | Tags: , , , , , |

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

Posted on July 31, 2012. Filed under: Art, Cancer, Family, Poems | Tags: , , , , , , |

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!

Birthday PartyParty 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…

Posted on July 30, 2012. Filed under: Cancer | Tags: , , , , , |

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.

Read Full Post | Make a Comment ( 3 so far )

« Previous Entries

    About

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

    RSS

    Subscribe Via RSS

    • Subscribe with Bloglines
    • Add your feed to Newsburst from CNET News.com
    • Subscribe in Google Reader
    • Add to My Yahoo!
    • Subscribe in NewsGator Online
    • The latest comments to all posts in RSS

    Meta

  • Enter your email address to follow this blog and receive notifications of new posts by email.

    Join 1,050 other followers

Liked it here?
Why not try sites on the blogroll...