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.

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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.

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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.

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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.

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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.

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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.

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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.

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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!

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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!

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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!

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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.

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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.

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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.

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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.

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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.

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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.

 

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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.

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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.

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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.

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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!

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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.

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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.

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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!

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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?

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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.

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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.

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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.

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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.

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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.

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Thursday, June 21, 2012

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

Because Dr. G will see me today, Scott is going to accompany me. He is always quick to come up with questions. I wanted to ask if the picc line will come out or stay in my arm over the approaching two weeks when I will be treatment-free. Dr. G asked me what I’d prefer. Of course, I asked what’s better, healthier. He thought about it and said that it’s probably better to have the line out to prevent infection. It’s a major production to reinstall it, but not a big deal to pull it out. I’m actually happy about this because I figure the hole will heal in a few days and I’ll be able to go to the beach. Maybe even swim! I try to jump in Lake Michigan once a year, at least. This year, it’s been impossible, until now!

I also wanted to ask him if he was related to my co-author’s physician who has the same last name. He said, “Yes” and changed the subject faster than a smart-ass caught red-handed.
Increasingly, I admire the nimble way oncologists paint pictures without using any paint. You ask a question and they dance around. You think you have an answer, but you soon realize, you don’t. I’m still unclear about what will follow the next 5-week cycle of treatments. I’ve come to believe that there must be a med school class on the fine art of dodging questions. Let’s face it…it you had all the gory treatment details upfront, it would be much harder to plow ahead. People would pull the plug on themselves right and left. And all those treatment dollars would disappear like a radiated tumor. Tragic.

Well, Scott got a taste of the merry-go-round room. Later, we had a discussion about why there are so few fat people in the treatment room. In fact, I’m usually the fattest person–and the doctor says this is no time to diet. If it’s so unhealthy, why aren’t there more heavy people being treated? Is it the North Shore location where the population is more likely to have their cosmetic surgeon on speed dial? But the area pulls in Evanston and the north side of the city too, where everyone is NOT a rail. Has everyone lost weight with chemo?  I doubt it.

I have to say, that after writing healthcare info for almost 20 years, I think all the health articles fulfill our need for control, however false, and provide a phony sense of security. I’ve known several people who did everything right and died young. Indeed, my fat is more a result of long hours at the computer and eating too much rather than stuffing my face with donuts. As my friend Richard said, “Emily, the world is a mess and we’re the canaries in the mine.” So it goes. (Says Vonnegut.)

After the drips, we motored on to the Social Security office which is right on the way home. We handed over additional paperwork to the young African American woman who seems to be visually impaired. She had a cane and her eyes are a little freaky, but she nimbly navigates her computer. Touché. I’m not sure what will come of this, but it would be really nice to get some outside financial support. Even if I didn’t spend about 20 or 25 hours a week on treatment, I’m so tired, it’s difficult to be majorly productive. By the time we returned home, I had about two hours left of the work day.

However, since I tend to come alive at night, attending our monthly dinner club was no problem. Jane chose a Thai restaurant within walking distance. I was able to walk there which means I achieved a two mile walk for the day. Never mind that I ate a huge plate of basil chicken and left without a doggie bag. We had a great time.

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Tuesday, June19, 2012

Posted on June 21, 2012. Filed under: Cancer | Tags: , , , , , |

Today, there is no one except me in the merry-go-round room. I am already hooked up to the IV arsenic. They have given me my ice water. Three nurses are discussing manicures. One has an artful paint job on her nails. The other has a new haircut from Mario Tricoci, which she swears is worth the price.

I left and hurried home. I had a small assignment to organize and I needed to finish filling out the claims for disability. Urg. I wanted to get everything done by 5 o’clock because I was going out tonight. A friend had “won” a beauty party at a cosmetics store in Evanston. I also needed to take a short rest before going out or I’d fall on my face…not a great look if you’re trying for a makeover.

The party started at 6 and my good parking karma won me a rock star space right in front. There were four of us in the store, which was a good number for optimal attention. We each received a free makeover and $20 worth of services. Of course, the premise is that we will fall in love with the hand-picked mascara or shadow or lipstick and be powerless to go home without them.

Most of us opted for a wax job on those prickly chin hairs. I only have a few, but I also have layer of fuzz, which is best seen in the sunlight. I never had anything waxed before and my flinching at the quick removal was a giveaway. After the “stylist/waxer” finished, she said I was breaking out in hives. “Some people have a reaction, but this will help,” she assured me as she dabbed on the aloe. She passed me the mirror and my chin and upper lip were bright red with white bumps all over.. It was like my body was screaming, “Nooooooooo…JUST LEAVE ME ALONE!!!” Point taken. But my chin was smooth and hairless!

A few minutes later, I was ready for my makeover, which was now sorely needed to cover up my sensitive skin’s reaction to one more chemical exposure. I told her to make my eyes stand out a little more because the thinning eyebrows and lashes were making my eyes disappear into my head. She slathered on a very nice foundation which covered my blazing chin fairly well without me feeling like I was wearing theater makeup. She brought my brows and eyes back to life with some liner and pencil. In the end, it looked pretty natural. I purchased some of the foundation because if it covered my red, lumpy chin, it performed well.
I wasn’t planning on going out afterwards, but these friends talked me into a brief dinner at Lulu’s just down the street. It was great except that the windy evening made me hold onto my head gear lest my bald head be revealed.

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Monday, June 18, 2012

Posted on June 19, 2012. Filed under: Cancer | Tags: , , |

The Merry-go-round Treatment room on a quiet day

Here we go again…week three of IV arsenic. What fun. My only new symptom is that my eyes and eyebrows are itchy as hell. I’m assuming that my eyelashes and eyebrows are thinning, but that’s weird because I have peach fuzz, white hair coming in. The doc said the hair may come and go for a few months depending on the treatment.

I am back in the merry-go-round treatment room. There is a middle-aged couple discussing the crossword puzzle they are working on. There is an elderly man who was supposed to have an infusion of platelet, but for some reason, they decided not to move forward right now. He was indifferent. My nurse looks like she could have been a character from “Friends.” She’s tall, brunette, attractive—but not too attractive—and sports a big smile except when her face is glued to the computer.

When I returned home, I ate lunch and hammered out some copy. I also went to pick up some things at Target. After dinner, Scott and I took a walk through the park—my mile walk. I brought my ghost radar which failed to show anything interesting.

It’s only Monday and I’m already feeling raggedy. The arsenic is making me retain water and my joints are swollen. My hands shake without a little dose of Xanex. I’m told that’s another side effect. Urg. However, I can feel like crap and sit at home or I can feel like crap and go out to see and do things that take my mind off of feeling like crap.

Scott rigged a patio mister with tubes he purchased. It didn’t quite come out the way he’d envisioned. Our plants are turning out great. Most of them are very happy and blooming all over the place.

Scott and I watched the Simpsons, which parodied the “Walking Dead,” one of my guilty pleasures. More than zombies, it’s actually about how to maintain a civilized society and humanity when the world is in chaos—which actually is a lesson we can use even without the zombies. If that’s too philosophical, you can always appreciate the gut-flying, zombie-munching special effects. The show is so popular, there’s now a show called “Talking Dead,” that follows the “Walking Dead.” The guests discuss the making of the show, the writing etc., etc. Weird.

Today is a day devoid of deep thoughts.

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Sunday, June 17, 2012

Posted on June 18, 2012. Filed under: Cancer | Tags: , , , |

Fathers Day. I can’t believe my dad has been dead for 12 years! I still think about him every day. I’m glad he died with nothing left unsaid between us.
But today is for fathers who breath. So we hustled off to Christy and Tony’s for a Father’s Day brunch. My ex/their dad was there. We picked up Veronica and Brendon on the way. She also picked up a summertime ball for the kids—and her—to play with. Christy gave Scott a very nice card. At Christy’s request, Veronica stopped at the Jewel for bagels. After breakfast, Anthony, Alyssa, Veronica and Brendon headed for the park. Christy and I strolled along with the hobbling dogs whose hips cause them to walk like drunkards. Their tails are still wagging though—and the enthusiasm with which they pee on trees demonstrates that they still have a passion for living. Scott and Tony stayed back and managed to fix the front doorknob.

In the 90-degree heat, the kick ball game was short-lived. Anthony stumbled off the field holding his belly and complaining that he felt like throwing up. The promise was fulfilled with an outpouring of blue all over the ground. Christy asked what he’d eaten. Had he swallowed his blue bubble gum? Red-faced and sweating, Anthony answered “maybe” following a preliminary denial. I’m sure the heat and running didn’t help. Tony was called to pick up the boy, while the rest of us walked back to the house.

In the afternoon, I tackled the disability forms and caught up with bills etc. It wasn’t easy. I would so have preferred to sit by the beach. In time. I also planned to go to the Mill and read, so I needed the time to get things done.

I thought I brought two Father’s Day poems with me to the Mill, but there was only one. Oh well. I read “Daddy’s Gay—and I Don’t Mean Happy.” It seemed to have gone over well. Marc asked me to share a dad story. I told the audience that Dad had recorded his life on audio tapes from 1979 to 2000 when he died. he was in the hospital with emphysema and waiting for the Y2K to cause worldwide chaos. After the anticlimactic event, there wasn’t a lot to justify his suffering. He was gone seven days later. The 10000 hours of audio tapes were donated to the Kinsey Institute. Billy Lombcardo also performed his traditional Father’s Day set with a few new pieces. Check him out http://www.billylombardo.com/. Wonderful.
Everyone asks how I feel. Every Friday is increasingly exhausting. After two days of no chemo, I feel pretty good by Sunday night…perfect timing.

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Saturday, June 16, 2012

Posted on June 18, 2012. Filed under: Cancer | Tags: , , , , |

I felt like lolling around this morning, so Scott whipped up an excellent breakfast. Going to the hospital everyday for these 9 am appointments is like holding a job—and I’ve been a freelancer for 13 years—so my weekends are precious again. I followed breakfast with a walk because I knew if I waited, I wouldn’t do it. I did a little over a mile. It was really hot out there…mid 90s! I also inspected my patio pots.

My plan was to plant myself in my studio and paint, which I did. I finished a painting a started in class and decided I hated it. It needed to be softer. I’ve been stuck on doing something purple, so I broke out the big new block of paper and made a second attempt. I think I succeeded. I need to look at it again tomorrow. Scott said the piece looked darker and heavier than my previous pieces. I didn’t think of it that way, but maybe I’m just putting the creepies, that I periodically entertain, on paper. Either way, it’s therapeutic.

After painting, Scott and I had “date night.” I’d heard about a play, “Sexy Baby,” a spoof on kiddie beauty pageants. It was performed mostly by men in drag, but there were a few women in it as well as a few men who were not in drag. It was hilarious from start to finish and poked fun at everything in society. Plus, the characters were well-developed, there was a lot of fun music and the costuming and facial expressions brought continuous raised eyebrows. Well done. Chicago has great small theater productions. Best of all, Scott got me a margarita. Salt and everything. I was told I could drink alcohol on non-arsenic days, so I savored it. It’s been awhile since I had one, so I forgot how good they taste. Yum.

It was too early and too nice a night to come home, so we drove downtown and attempted to see the skyline from the planetarium, but there was a music/dance festival ending at Soldier Field, so traffic was routed back to the Drive. Lightning fflared in the southern skies. We arrived home just before a long-awaited summer shower. I know it’s still spring, but with 90-degree temps, it’s a summer shower. Enjoy.

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Friday, June 15, 2012

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

Today’s hospital visit was quick! Only three hours. I arrived at nine, was ushered into a private drip room (not the merry-go-round) and hooked up to the bag of arsenic. Since I managed to get out of there a little after noon, I hustled over to the Social Security office to apply for benefits. I’ve brought my mega-binder with all my health records in it. I only had to wait about 10 minutes before a very sweet, and obviously new, government cog took my info. She seemed to be optimistic about me getting benefits. This is so weird, because I can count on one hand the number of times anyone gave me more than $1000 without me working for it. I’ve never even had unemployment, a severance package or workman’s comp—although at times I’ve qualified for all three. Paid vacation and sick pay is as close as it gets. Being a freelancer for 13 years make those benefits a distant memory as well. However, with 4 and 6 hour daily sessions of chemo that leave me tired, I don’t know why I wouldn’t qualify!
For dinner, Scott and I went to Royal Thai, which we haven’t been to in a long time and had our usuals: Garlic chicken and Rama chicken. I so savor these ordinary things.

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Thursday, June 14, 2012

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

I’m feeling better. I started the day with an EKG that continued to show anomalies, but magnesium and potassium levels were OK, so the cardiologist said I was fit for chemo. They strung up the bags and hooked me up. This gave me a chance to catch up on my blog and return some calls. I was in a private room, so I also tried to take a nap, but I’m so shaky and achy, I really couldn’t sleep.  It was nice to close my eyes anyway even though they’re itchy and sore. The nursed brings a big, warm blanket and you can flip the chair back. I was home by two and crashed on the sofa.

Not long after that, I got a call from my leukemia mentor. They mmatched me with a 64-year old man who lives in Michigan. He also has a home in Scottsdale. He marks November as his fifth year anniversary of his diagnosis. We had a really pleasant talk. He’s intelligent and laughed at my jokes. Best of all he had exactly the same diagnosis—and is now five years out. He said he volunteers at the Mayo clinic in Scottsdale and is always stunned by the number of breast cancer survivors suffering from secondary cancers. He encouraged me to call him anytime and said he’d check in again. I look forward to hearing more from him.

Scott and I have been looking at sofas for the living room. We want a sectional that’s not too expensive. A more unconventional color would be nice. I don’t want leather because it sticks to you in the summer and is cold in the winter. We don’t want to pay an arm and a leg either. When I regrouped, I suggested we ride on over to Marjen’s furniture store to see what they had. We even parked several blocks away to get some exercise, but I have to be careful because my heart starts beating as soon as I start doing anything. Marjen’s is a family-owned, warehouse-style store.  They have great prices and fairly good furniture. I have been buying stuff from them for years. They had a couple of options that were super reasonable, but I wasn’t excited.

When we returned home, Scott made a great dinner and headed off to Home Depot. He wants to make a mister on the patio for those hot summer days. I caught up with phone messages. I also wrote some copy for an ad and sent it off. All-in-all, not a bad day. Way better than yesterday!

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Wednesday, June 13, 2012

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

Bummer Alert: I haven’t been letting myself feel sadness, but today I am indulgent. I’ve heard too many stories of leukemia ending badly, which is why, yesterday I called the organization that offers survivors as mentors. I need to hear from someone who survived this and the stats say they’re out there. Or perhaps my downer mood is simply the result of resuming the evil drug that suppresses my estrogen, Femara.

Dying doesn’t even bother me that much. All the cool people do it: John Lennon, Gandhi, Emily Dickinson. But, I’d feel I would have disappointed those who love me. I wouldn’t be the “trooper.” I would like to think I could still watch out for them, but they wouldn’t know it. They’d grieve—and I’d be the “bad guy.” Eeeewww. But we all go sometime. I have faith in a spiritual afterlife that’s more rewarding than this. Moving on is not all that bad, especially with perpetual illness. A body tormented by pain and illness has difficulty enjoying life. Luckily, I’m not in major pain.

Rather, the sadness comes from lack of freedom. Before the diagnosis, I felt almost back to myself. During the previous six months, I wrote a manuscript of poems and sent it out. I finished my web site. Plus, I was billing at a new high. My creative juices were flowing like hot lava!

Now, I am back in chains…literally. IV tubes demand half my day. The picc line in my arm must be wrapped or it flails about and risks getting caught on something. My wrist is banded with my name, rank and serial number. My head is bound in a scarf, although I’m trying to get the guts to go bald in public. Even when I envision coming for treatment, I picture walking up to the desk to check-in, which is against a long, dark brick wall that seems to stop my life in its tracks. I’d like to plan a vacation, but how long will this go on. Now way to know. Right now, there is little space or time to be more than an arsenic sponge.

This will pass. I tell myself to be patient. To NOTICE the special moments. Yet, I’ve been patient enough! That’s when the sadness turns to frustration and anger. Oh, forget it for awhile. I’ll stop whining now. Thanks for listening.

Meanwhile, on my way to treatment I stopped at the fabric store for more cool fabric for scarf options. The two that I purchased a couple weeks ago are working out great. I got five more. I wish I had time to sew, because there were some gorgeous fabrics. But the time investment it takes to whip up a shirt makes it a pricey endeavor. So where do I need to go to get clothing made from these fabrics? My usual stomping ground is Target. No wonder I don’t run into better stuff. 

When I arrived at the hospital, I incorrectly thought I was due for another EKG. That’s because I thought it was Thursday. I announced this to the clerk and she sent me for the EKG, which only took a couple minutes. Then I pranced over to the merry-go-round, (AKA infusion center) where I was reminded that it was Wednesday, not Thursday when the EKG was due. Drat! It’s all too much. It didn’t take long for my EKG results to come back. All of a sudden, the nurse turned off the drip. I heard her on the phone explaining the QTC levels were 515 so should she proceed? With the netbook on my lap, I googled QTC and leukemia. One site explained a healthy level ceiling is 440. Higher levels risk arrhythmia, which leads to heart attack. I googled QTC and arsenic. Yes, arrhythmia is a side effect of arsenic. I listened to more calls between the nurse and Dr. G. The nurse turned the machine back on and I inquired. She dumbed down the answer and said that to stabilize my heart, they were going to add a magnesium drip and potassium pills to the arsenal for the afternoon. Then, I should get another EKG in the morning. I guess my confusion paid off by catching a potentially dangerous condition sooner. Thank you, Universe. I spent the rest of the afternoon hooked up to three drips.

There was a really cute older couple here with their middle-aged son. They were both a little bent and shrunken with age, but their clothes did not come from the old people dept. The wife was here for her FINAL treatment for ovarian cancer. In hushed voices, they were chuckling during a deep discussion about various religious concepts of heaven and hell. I could not tell which views they sympathized with. At the end of her treatment, her husband pulled out a gift box and presented her with a lovely stone set in some sort of jewelry. (Hear that, Scott?) I may be nosy, or as I prefer to say, “curious,” but not enough to move across to room to demand a peek. Before leaving, the woman left a box of cookies for the nurses. She slipped her bald head back under her hat and even turned back to wave at me, wishing me luck on her way out.

I finally was “unhooked” about 5 pm. That’s when I noticed an email from the mentor organization. They matched me with a 64-year old man named Dennis in Michigan, who is also had an APL diagnosis. I’m interested to hear his story. Ugh.

I went to the Pita Inn with Scott for dinner before we ventured to Joyce’s house. Joyce invited me to look over her scarf collection. I borrowed a stack of great looking scarves for all types of occasions. By the time we returned home, I was exhausted and, after checking in with Christy and Veronica, I went to bed. What a day!

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Monday, June 11, 2012

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

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

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

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

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

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Sunday, June 10, 2012

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

What better way to start a Sunday than with friends who I don’t get to see too often and a diner omelet?! I drove to Oak Park, a half-way point and spent most of the time yapping about health updates. Geez I guess I’m becoming one of those old people who talk about their ailments! With a hot pink scarf on my head, I attracted the attention of a woman who stopped at our table and gave me a gave me a thumbs up along with acknowledgement that she was also a breast cancer survivor. Even though I’m currently dealing with leukemia, I took the comment in the spirit it was intended. Besides, I’ve ridden that boat as well. 

From there I went home and did a few chores before gathering some poems for the Green Mill. After all, it gives me something to talk about other than treatment trivia. Dick and Connie, back from Florida, were also going to be there. By his request, I read “Empty Nest.”  Veronica stopped in for the featured poet. Tonight, it was Taylor Mali, who is a great performer and equally shameless promoter. Tonight one highlight was that a woman who I met about 18 months ago reappeared with short hair. I didn’t recognize her, but she explained that she’d been diagnosed with breast cancer a few days before we’d met. I had shared my story and reassured her which had meant a lot to her. I was pleased that I could help and tonight she helped me.

After the show, once again, there was an entourage at the Mexican restaurant. There was Mark and Ron from EM Press, Dick and Connie, Susan and a couple other people whose names escape me.  I returned home by midnight and felt great. Also happy to have hit the stage again. I have so many poems in mind. I must start writing them down again.

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Friday, June 9, 2010

Posted on June 9, 2012. Filed under: Cancer | Tags: |

Boring! I’m again getting the IV arsenic, but I’m trying to take a nap during the drip. I’m too tired to type. I’ve gained two more pounds, which I need like a whole in the head. The drug causes water retention so they also give me a drug for that—which means I unplug the IV and drag it down the hall to the bathroom. No biggie.

I finally have an appointment with Dr. Raviv at 1:45. He’s the ENT my internist referred me to for my chronic sinus/ear infections. I now have a clear head, but I figured I’d grab the appointment so I could get in easily when I really need to. I felt desperate in the hospital because I had an ear infection there and with my immune system shut down I had visions of succumbing to an ear infection gone wild.
Since there was such a long wait between the morning infusion and the afternoon investigation, I went to the basement of the hospital to discover their cafeteria. It was pretty nice. I heaped on veggies from the salad bar and went to toast a small roll in one of those machines that accepts the bread on the top and toasts it before it rolls out the bottom. This particular roll got caught on the top of the heating element. It didn’t take long for little flames to emerge from the toaster. I turned off the toaster and beat out a few flames with a spatula before they started up again. The manager came and pulled the roll o be ut from the element. The cafeteria didn’t smell TOO badly from the burned bread—and here were no injuries or law suits. Then I sat down and listened to a group nurses talk about their children going to college. One was newly single and the others didn’t hesitate to offer advice.

Scott was to meet me at the ENT’s office so I headed over to the other building. Filled out their forms and basically it was just as expected. He couldn’t really do anything until my sinuses were acting up. Although, I was impressed that he’d already looked at the CT scan they’d done when the hospital staff was afraid I was bleeding in my brain on day four(?) of my four week stay. To be continued.

So we went home. I crashed. Scott went for a walk. I wanted to get downstairs and work on my paintings, but I’m absolutely beat. I want to get my disability forms submitted, but instead I lay on the sofa and filled my head with Judge Judy and other crappy TV. I did manage to make a decent dinner. Later, we watched Iron Lady via On Demand. I prefer to go to the movies because:
• I like sharing the movie experience with others.
• Scott falls asleep at home and then I end up watching it alone.
• Popcorn!
I always wanted to see Iron Lady because Meryl Streep is excellent and Margaret Thatcher, although quite a right wing bitch, managed to be a Prime Minister, which is more than any American woman has done. The movie was pretty good. Before I went to bed, I sat out on the patio for awhile.

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Wednesday, June 7, 2012

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

Wow, the treatment has caused me to gain 10 pounds in the past few weeks. Since it’s mostly water, they threw a diuretic into the mix. Thoughtfully, they did it soon enough that “there won’t be any need to look for a gas station washroom every two miles on the way home.”  But get up every 30 minutes and drag the IV to the restroom…oh yeah.

This being my second Wednesday of IV arsenic for my leukemia, I fell on my face when I came back home just  like last week. Is Wednesday some sort of “hit the wall” day. I asked if the effects were cumulative and the med staff dances around before saying, “well, for some people.” I sound crabby.

After catching a second wind, I went to my office and filled out some disability forms, but not before spilling some of my sugarless lemonade on my laptop’s keyboard. I thought I’d cleaned it all, but did a back up, just in case. Sure enough, a couple hours later it was beeping and blinking like a carnival game. “Scotttttttttt, helppppppp!”

Scott worked his magic by tipping the machine on its side, which drained out a bit more lemonade. Then he put it in the dryer to sit on a sweater rack for 30 minutes at low heat. When the dryer beeped, my little Toshiba was too hot to touch. He put it on the dining room table with a hot pad—no trivet needed—and let it cool. A few hours later, it seemed to be recovered. Then Scott went to a Meetup on WordPress SEO.

Introduction to Emily’s Even Weirder Side: I decided to fulfill my daily obligation to walk a mile. That’s not the weird part. There’s an area in the park across the street that’s creepy so I thought I’d bring my phone that has the app Ghost Radar since it never shows anything interesting in our house. My 9-year old grandson recommended the free app on Sunday and I thought it looked fun. http://www.spudpickles.com/GhostRadarLegacy Really, spud pickles? Never mind that the app claims to detect anomalies in the atmosphere and put them on a radar screen. Never mind that words appear as they are supposedly picked out of the airwaves. I am of the belief that even if this app was authored by a band of Nigerian con artists, if a spirit wanted to use it as a communication tool, they might be able to do so. And, after many years of serious paranormal study, I am aware of the perils of creepiness. However, walking the park’s length and back is a mile, so it’s a practical destination. There’s also a hill in the middle that offers a great scenic view. I was determined to reach the top no matter how my heart pounded with arsenic.

OK…I get my phone going, wrap myself in protective light and Ghost Radar fails to pick up anything. Half way across the park, I decided to invite my dad to comment on my current battle with leukemia. Blip…I get a blue circle on the radar. “How do you feel about my current situation, Dad?” In relatively quick succession, the words “differ” “for” and “badly” show on the screen. Interesting. There seemed to be some sort of response. Was it a sentence with words dropped out? A few more questions yielded zip. I changed my strategy. Let’s talk to a friend who died of ALS last year. He was a beautiful person who knew how to appreciate life in every way. I questioned about my outcome, but “watch” and “mountain” appeared along with another blue light. It was time to walk to the hill. Cool.

I headed to the top with my head down because one never knows what one might step in. “Mountain” stayed on the screen. About half way up, I started getting breathy and “notice” came on the screen. I looked up and found I was exactly at a point where the evening sun hit the top of the hill and shown through the trees. It was spectacular, so I decided to take a photo. “Notice” was still on the screen. As you can see the photo revealed an aura around the setting sun—that was otherwise undetectable. “Notice” stayed on the screen until I was home. Nice message for anyone. I’m not crabby anymore either.

Séance anyone?

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Monday, June 5, 2012

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

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

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

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

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

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

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Day 23: Friday, May 4, 2012

Posted on May 5, 2012. Filed under: Cancer | Tags: , , , |

Energy level is down today, but motivation is up. Christy arrived in the morning and she helped me enter some changes a client had faxed to the office last week. The client is being awesomely supportive, but I thought a little regular work might make me feel more like a regular person. It helped.

My platelet count went up 1000 points on its own, but it may just be baiting me, so I’m not too excited. My body is going to have to work harder to impress me after getting my hopes up. Other levels are the same.

Scott arrived after Christy left. We worked on a few more changes to the documents I was writing. While he was visiting, the social worker stopped by to see how I was doing. I told her that I had a day of frustration and she went back to her office to bring me a book she thought I’d like. She also pointed out a specific chapter that had a visualization exercise. After everyone left, I started reading the chapter and it truly resonated with me. So when Veronica arrived, I askeImaged her to read the visualization exercise. Part of it asks you to interpret your blood, platelets and all, gaining power and overcoming bad cells. I envisioned all the people who have been so supportive wearing hard hats and running through my bone marrow carrying pickaxes. They were releasing the platelets, which look like poofy pink blobs with appendages, from the bone marrow and stamping out the bad cells. Fun.

The doctor said if I’m not improving my Monday, he would like to do another bone marrow biopsy to see what’s going on in there. Ewwww…that was NOT fun. More motivation to be out of here on Sunday! I think I’ll visualize that!

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Day 8: Thursday, April 19, 2012

Posted on April 19, 2012. Filed under: Cancer | Tags: , , |

You know Emily isn’t feeling well when a bag of Skinny Popcorn from Whole Foods (that her daughter brought on Saturday) is still unopened in the shopping bag by the hospital bed. This morning’s nausea inspired me to munch on it. I remember morning sickness and always feeling better after I have something in my stomach, so when I woke with dry heaves, I ordered breakfast. Meanwhile, they upped my anti-nausea drugs and told me they’d give me a bigger dose at night for tomorrow morning.

Received a huge balloon bouquet. After lunch I managed to do another lap around the floor by myself. I survived. I am more tired and, as they told me, I should be turning a corner in a few days and start to feel better. Scott brought me crackers so I can munch on the crackers while waiting for breakfast. Veronica arrived after work.

The nurse informed today that I am the lowest maintenance patient on 5 south, so I am supposed to think up things for her to do for me. Most of my requests are, “cover my IV so I can take a shower.” This only brings in the lowest in the nursing ranks who I have learned have light green uniforms.

I’m kind of amazed that I have not become more restless. I’ve been working like a crazy person, for a long time, but oddly, laying here staring at the ceiling, as not become old. Sometimes we think we just want everything to stop, and that’s what I feel like I’m doing. Except I’m stopped. I sure I will become more restless down the road. Though, right now, the inactivity is strangely peaceful.

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Day 7: Wednesday, April 18, 2012

Posted on April 19, 2012. Filed under: Cancer | Tags: , , |

This morning the blood guru came in and told me that some of my chromosomes are not in keeping with the APL diagnosis. The comment from the lab is that it negatively affected the prognosis. Of course, I didn’t ask how negatively. However, he went on to say, that he did some further research and found that when those type of chromosomes appear in the context of APL, there is no difference in the already established 90% survival rate. So, the plan is to proceed as intended for now.

I was a little nauseous as well and remembered an NPR segment on severe morning segment, which I enjoyed for 9 months (twice), being equivalent to chemo. I remember making a note to self: I guess if I can handle morning sickness, I can handle chemo.

When the doctors were here I also told them that I am not very much of a morning person and if they came by in the evening, they could see that I am much more fun.

Scott also stopped by but I was too pooped to party.

Fellow artist Ally came by with a primo bag of art supplies and a book about a woman who started painting at age 72 and became a leader with a certain technique. Sounds encouraging.

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Day 6: Tuesday, April 17, 2012

Posted on April 18, 2012. Filed under: Cancer | Tags: , , |

No headache for another day! And my platelets have unexpectedly jumped to 23K, which the doctor said was a little weird, but good. He said he didn’t know why. This will be the three out of four days that I get one of the chemo drugs so side effects may be kicking in soon. They haven’t really started yet.

Christy arrived again at 7 am with a sausage and cheese McMuffin to diversify my breakfast selection. It was a nice, and allowable treat supplemented by juice and other healthy beverages from the hospital kitchen. Since those bask in your stomach for 6 hours, I just had soup for lunch and was very satisfied. The appetite is definitely subsiding. I was really tired though, so Christy just sat and read while I took a napped.

In the afternoon I enjoyed a steady flow of visitors. Irene brought some “cling” photos she’d taken at the Botanic Garden. They were beautiful and simply adhered to the wall with static cling. One of my Poetry Slam sisters/Words with Friends players ventured for a visit as well. Her boyfriend works downstairs and when he heard I was on the 5th floor thought I was in the psyche ward—not that this couldn’t cause a breakdown, but I am on 5 South where oncology patients lumber about, not 5 North…at least for now.

Image

Later, our friend Caryn arrived with Scott. We all had a fun time talking. Christy also send a video of grandchildren greeting me with a tap dance routine, they’d concocted using plastic storage to make  noise for tap shows. As expected, their no-TV punishment has spawned a lot of creative play.

Veronica brought a card from her current freelance client, who is also a friend. The cover said, “When bad things happen, I look to God and scream, WTF, Dude.” Inside it said, “But Respectfully.” Or something like that because we’ve lined a few cards up on the windowsill, but my tubes don’t reach quite that far. Good card.  I also received a limerick from fellow poet, Carolyn Aguilar:

‘Tis a poet who lives on Grand Montrose

whose smile is like pink-satin primose;

She lifts all our spirits

with her finely-drawn lyrics,

and wows us with her ass-kicking prose.

Veronica also ordered Rama Chicken for me from a Thai restaurant in downtown Evanston so I actually got some green vegetables. Don’t worry. We ordered them cooked to limp, so bacteria was accounted for. It was great! After dinner we watched an episode of Fact or Faked on the SYFY channel. The show’s “experts” try to disprove claims of all sorts of weird phenomena. Last night, they could not disprove the presence of an entity in a bar. They did disprove a video of a “witch” flying outside a remote Mexican cave. Fun!  Since she also brought the “Would you rather” cards, we discussed the pros and cons of a lifetime with tics or head line and the whether we’d rather arrive late to a seminar or early to a party where we don’t know anyone. Thoughts? We agreed that tics would be easier because at least you could get away from them more often, even though they are more dangerous.

I meditated again, but failed to get that cool vibration going that seems to be so therapeutic.

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Day 5: April 16, 2012

Posted on April 18, 2012. Filed under: Cancer | Tags: , , |

Well, my left-brained, early rising medical pros are starting off their week with gusto. I don’t think I was quite conscious when the first nurse entered to room to take the vitals. Then, another. Christy arrived about 7 am so she could get in some visiting time before work and also beat the traffic in the long haul from Elmhurst.Then, the entourage following the blood guru piled in and actually spent more time admiring my grandchildren’s artwork than they spent looking at my chart—which is fine with me.

I meditated before sleeping last night and DID NOT get a headache as I did the two prior nights. Yay! I had to call for a Tylenol in the middle of the night. No nausea yet. I’m tired, but have had worse hangovers.

My primary care doc, Dr. Ryu called today and said she tried to get me on Friday, but the phone was busy. She wanted to let me know that she was watching the reports and felt everything was going fine. She keeps reminding me that it’s a process. She’s great to be calling me, since I am currently off her roster of concerns because the hospital has two, on-staff internists covering me. I mentioned that I thought I kicked some headaches with meditation and she asked if I’d mentioned that to the doctor. Being an integrated medicine doc, she has a passion for news like that. She said I should keep mentioning it and be the current ambassador for integrated therapies here. Blood platelets levels are up to 19000 too…just saying.

They keep you very busy here, so I’m not getting painting and writing done as I’d planned. The blog is fun to write.  Later, Scott and Veronica came by.  I also took two laps around the floor, which is no teeny jaunt. Also pushed my own IV “tree” for a little arm exercise.

I am going to make sure I meditate again tonight.

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Day 4: Sunday, April 15, 2012

Posted on April 18, 2012. Filed under: Cancer | Tags: , , |

Slept very well again…thanks to Ambien! Then woke about four a.m. with another headache that was irritating enough to buzz a nurse for a Tylenol. That worked pretty quickly and I went back to sleep.

ImageIn the morning, Dr. Greenblatt, the hemhatologist/oncologist gave me a heads up on the IV chemo, which will start about 1 pm. He said my hair will go in a week or two and I’ll actually feel more energetic due to steroids before I plummet into nausea and weakness—although they will give me drugs to prevent that as well. I can’t help but wonder what those drugs might cause down the road and maybe a little nausea might be a better option. For someone who had nine months of morning sickness, I’m not intimidated. He also informed me that my blood work showed some chromosome abnormalities beyond the leukemia so they are sending the blood on for further analysis. Creepy.

My prior oncologist stopped by to say, “hello.” He is a character with a very dry sense of humor. I think, he thinks that it’s not OK to joke with me. He told me the least he could do was take me off the Femara that I’d been on since my brush with breast cancer. Although I consider this tablet my nemesis, I asked him if I was going to spiral into some crazy state given the abrupt change. He said he thought it would be OK. We’ll see!

Image

It’s 12 noon and they hooked me up to some drugs that will prepare my body to host poison. It reminds me of some biological Halloween event.  Black drapes and spooky faces. Dress up the room for the skull and cross-bones.  Veronica and her boyfriend, Brendon and Scott came for the festivities and we had a great time. Brendon suggested playing “Would you rather?”  He asked, “Would you rather be slathered with meat and thrown in a lake of piranhas or have leukemia?  After laughing, I said I’d rather have leukemia because I thought I had a better chance of battling it than a lake full of piranhas. The nurse who was taking the millionth vial of blood out of me shook her head as she left the room saying, “you people are twisted!” Thank you!

By evening, I was fully doused with chemo stuff.  The kids left and Scott returned in time to watch “Mad Men” with me—which was awesome.With no DVR, I was determined to watch it in real-time, and we did.

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Day 4: Sunday, April 15, 2012

Posted on April 18, 2012. Filed under: Cancer | Tags: , , |

Slept very well again…thanks to Ambien! Then woke about four a.m. with another headache that was irritating enough to buzz a nurse for a Tylenol. That worked pretty quickly and I went back to sleep.

ImageIn the morning, Dr. Greenblatt, the hemhatologist/oncologist gave me a heads up on the IV chemo, which will start about 1 pm. He said my hair will go in a week or two and I’ll actually feel more energetic due to steroids before I plummet into nausea and weakness—although they will give me drugs to prevent that as well. I can’t help but wonder what those drugs might cause down the road and maybe a little nausea might be a better option. For someone who had nine months of morning sickness, I’m not intimidated. He also informed me that my blood work showed some chromosome abnormalities beyond the leukemia so they are sending the blood on for further analysis. Creepy.

My prior oncologist stopped by to say, “hello.” He is a character with a very dry sense of humor. I think, he thinks that it’s not OK to joke with me. He told me the least he could do was take me off the Femara that I’d been on since my brush with breast cancer. Although I consider this tablet my nemesis, I asked him if I was going to spiral into some crazy state given the abrupt change. He said he thought it would be OK. We’ll see!

 

Image

It’s 12 noon and they hooked me up to some drugs that will prepare my body to host poison. It reminds me of some biological Halloween event.  Black drapes and spooky faces. Dress up the room for the skull and cross-bones.  Veronica and her boyfriend, Brendon and Scott came for the festivities and we had a great time. Brendon suggested playing “Would you rather?”  He asked, “Would you rather be slathered with meat and thrown in a lake of piranhas or have leukemia?  After laughing, I said I’d rather have leukemia because I thought I had a better chance of battling it than a lake full of piranhas. The nurse who was taking the millionth vial of blood out of me shook her head as she left the room saying, “you people are twisted!” Thank you!

By evening, I was fully doused with chemo stuff.  The kids left and Scott returned in time to watch “Mad Men” with me—which was awesome.With no DVR, I was determined to watch it in real-time, and we did.

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Day 3: Saturday, April 14, 2012

Posted on April 16, 2012. Filed under: Cancer | Tags: , , |

Image            Image

What better way to spend a Saturday than sit by someone’s bedside in a hospital! That’s what Scott, my daughters, my grandkids, and my ex did today. Luckily it was gray outside, so they didn’t miss any good weather. My grandkids drew representational pictures of my good “sells” killing my evil “sells.”  Christy taped them up over the washed-out print.

In the afternoon, they carted me off for a CT scan of my head because I’ve been getting headaches and they want to make sure it’s from their chemo pills and not from a bleeding brain. I’m not one to have headaches, but I’m thinking this is going to be nothing. Fastest CT ever, though, so no biggie. Not like the 25 minutes I spent in the MRI yesterday laying completely still for the heart scan.

Saturday night ended with SNL, which seems to be a tad better than it used to be. I couldn’t believe how fast they came up with a reference to Obama sending home the secret agents from Colombia, where one of them failed to pay a prostitute…how symbolic of our relationship with South America.

I’m feeling strangely peaceful. That makes me worry that I’m not a “fighter.” Meanwhile, everyone reminds me that my positive attitude will pull me through. Does feeling peaceful mean I’m not a fighter? Or is it just Ghandi-style approach to life. Passive resistance. It usually serves me well. In my memory, my dad’s voice bellows, “Die young and leave a good lookin’ corpse!” I’d like to think I have a few years left to leave a good-looking corpse.  I’m not fond of imagining myself with dementia and being pushed around lugging an oxygen tank, but you never know. I DO know that I’m incredibly stubborn and tenacious—and many joys and struggles left to be experienced. Warm breezes, the smell of bread, Exploring a new city with Scott. So many poems left to write. So many paintings left to do. Watching grandchildren grow. I have a bucket list and want to fulfill it, which is motivation, for sure. I also want to be there for my husband and daughters. Parenthood doesn’t go away; it just changes. But most importantly, I realize I need to put myself front and center.

Before my dad and my friend Richard died, they both acknowledged the fact that they’d lived life on their own terms. It didn’t make them rich, but it made them happy. And, it made their lives worth living. I can’t say that. There have been so many “shoulds.” Not always, but too many.  I let that thought lead my decisions.  Makes the future much more fun—and good advice for all of us.

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

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