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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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.

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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!

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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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Day 2: Friday, the 13th

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

What’s worse than a bone marrow biopsy when you have veins the width of strands of hair? A pic-line. Enter the pic-line pros who converted my room into a makeshift OR. Their ultrasound showed a lovely thick vein on my left arm, but when the vein pro went in, it tightened in a most inhospitable way. It was a no-go. So let’s puncture me again! Only this time, go for the vein near that nerve and artery. OOOUCCHHH! I jumped six inches off the bed when the tube hit home, but it was in and the vein was letting it sit there. The hole bled contentedly for the rest of the day and then decided to behave when a nurse changed the dressing. There will be no tank tops this summer.

Another highlight of the day was getting a heart scan. The test was regarded as a baseline because the chemo could cause damage. Once again, the heart scan showed a strong, unclogged heart. Go figure.

At night, they moved me to a larger room that has recirculating air so I won’t get cooties from anyone else’s air. This one has as great view that looks out over the front of the hospital and in the distance, you can see Lake Michigan. Nice. There are also tons of chairs for visitors who only need to enter with a mask.

I’m trying to get used to watching TV in real time. If I want to catch Mad Men this Sunday, I’m going to have to watch the clock because I don’t have the DVR…OH the trials of hospital life!

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April 12/Day One: APL? AML? How do you spell leukemia?

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

Enter the parade of medical professionals. WhooHoo. To confirm the diagnosis, they needed a bone marrow biopsy. BoooHooo. They also collected a zillion vials of blood while informing me that they would put in a “pic-line” so they could administer chemo and extract all my diseased blood without poking me with needles. Eeeewww. But that could wait.

Since the day before, my platelet levels had dropped to 10,000. Below that, there’s risk of spontaneous bleeding, which can lead to a bloody mess that just might kill you.  So, they transfused a bag of platelets, donated by some good soul. Thank you, stranger. The platelets were golden, in more ways than one, and looked somewhat gooey.

Meanwhile, Scott and I googled the possible suspects and side effects.  APL  was suspected, which is very aggressive. Life expectancy without treatment is 30 days. I was nearing that since the onset of symptoms. With treatment, there’s a 80 to 90 percent success rate. The other type was more complex.

In the hematologist/oncologist came in discussed the upcoming bone marrow test and said the leukemia was likely caused by the radiation treatment I’d had for breast cancer some years earlier. He returned a few hours later to jam something that felt like a screwdriver into my innocent hip bone. Supposedly, they use something to numb the area, but I relied on everything I’d learned in Lamaze training to get through it. Breathe in. Breathe out. Not fun. Luckily, it didn’t last more than a few minutes, but the rest of the day felt like I was sitting on a case of misplaced hemorrhoids. That, and the platelets, were very memorable.

The nurse oncologist also met with me and said they’d start oral chemo drugs, which help either type. Then Sunday, we’d start regular chemo. I could expect to lose my hair, which is really a bummer since I finally got a half-way decent cut!

This was when I started living in a “bubble.” No fresh fruit and veggies. Only cooked. No flowers. So I asked Scott to bring me paints. I will paint some. The walls here need new art anyway. The prints are all sun bleached.

In the evening, Scott, Christy, Veronica, Brendon, her boyfriend and Pedro all gathered and we actually had a few laughs. After they left, I took a long-awaited shower with the help of Yurie, the Russian nurse who knows martial arts. I told him I was feeling scummy and he said, “Why do you think we wear these masks? It’s the smell!” He has a sense of humor. I love it. Before I went to sleep they confirmed type APL.

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What Happened on April 11, 2012

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

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

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