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.


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:

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, 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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Saturday, October 6, 2012 Mug Shots and Chemo Saga

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

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

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

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

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

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

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

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

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

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

What to be for Halloween?

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

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

Not Unlike Sheep

A field of sunflowers —

where do they turn in the dark?

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

to seek sun.

Do they rely on the moon?

Forget their addiction to sunlight?

Strain light from stars?

Face each other in confusion?

Sleep, knowing a new day will dawn?

Surrender to darkness?

Whatever the answer,

they grow, rise, feed and die

with the seasons

grounded in green and yellow patchwork across the horizon

shedding seeds for generations.

* * *

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

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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.

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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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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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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 )

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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Friday, June 22, 2012

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

“It’s like this:

I can feel like crap and lay at home in bed,

or I can feel like crap and be out doing something

that makes me forget that I feel like crap.”

Today was a lot like yesterday. Scott came with me for treatment. Arsenic in bags on hangers. Hook me up. Unhook me. Except today I had a regular visit with the breast cancer oncologist who poked around and gave me the “all clear.” Since we had a private room, the scenarios of other patients were limited. Because it’s Friday, I’ve had about all the arsenic I could take. I went home and lay down for awhile.

Part of today’s agenda included returning a matte that I recently had cut for one of my paintings. I had sent Karen final jpgs of the works in mattes. Her Virgo love of detail noticed that one side of the matte looked smaller than the other side. I measured and sure enough, there was a 3/16th difference. Once confirmed, the difference screamed at you. So, I needed get myself together to return it and have them fix it. Since Scott had picked the work up, and noted the crabby staff, I wasn’t exactly looking forward to the exchange, but hey, it looked weird. Lucky for me, the staff person was super nice and had a guy re-cut it in five minutes. They even let me keep the old one, which I can use if I turn it sideways. No problem.

After rousting up dinner, Scott and I went for a walk. Of course, because it’s now 8 pm I’m feeling much better, and being a night owl, will probably get a second wind about 11. Tonight, Scott suggested a river walk, so we drove over to the other side of the river and a little south. There, we found a mulched path with brush trying to take over along the path. Some of the path became rather rustic and because you can barely see, and the land drops to the river, I opted for a neighborhood walk after a few blocks. We probably walked at least a mile, so even though I feel pretty energy-robbed, I’m still trudging along.

I’ve had a yearning to whip up some jewelry so when I got back, I got out the beads and knocked out four pairs of earrings in almost no time. Just the kind of relaxing activity I needed before bed.

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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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Wednesday, June 20, 2012

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

My chin is almost bumpless from yesterday’s waxing, but I keep adding cortisone just in case.

My friend Maria asked to accompany me to my treatment today. I warned her that it was likely to take at least three hours. She said we could have lots of time to catch up. I warned her that it was boring. She thought otherwise. I warned her that it started at 9 am, which meant she had to be at our housed at 8:15 if she wanted to pick me up instead of meet there at a more civilized hour. She was fearless. She arrived at the house a little after 8 am. We were there by 8:30 am.

In lieu of our get-together, I requested a private room and was accommodated. No merry-go-round room today. I thanked the nurse and we reminded her that it was probably better that we wouldn’t subject the other patients to our laughter as it was that we could gossip in private….and talk we did. There was no downtime and I’m sure we could have gone on for at least another hour.

Later, we stopped at Selmarie for lunch and also indulged in gelato at the store across the square. It was in the 90s—not pleasant!

After Maria took me home, I worked on organizing my desk and finishing up some copy. I finally felt like I was making progress. Then, I took a little rest.

We ate dinner on the patio even though it was pretty hot out. Then we took a walk along the east side of the North Branch of the Chicago River. It was dark, but most of the path was intact and easy to navigate. When it wasn’t, we walked down the streets and enjoyed looking in the windows of bungalows. I want to bring my grandkids here. I want to watch them traverse the mulched path and watch the river flow past them.

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


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