Merry Christmas!

Merry Christmas and God bless you and your family!

This year our prayers have been answered. What better way to celebrate than to bake Jesus a birthday cake? We even have Happy Birthday Jesus party hats, compliments of a good friend. For dinner we'll be eating pizza because according to Katelyn, that's what you eat at a birthday party.

We are so thankful to be spending this holiday at home, creating new traditions, instead of in the hospital. As happy as we are today, I can't help but think there are others now going through what I went through last spring. (If you are one of them, please write me via Facebook, and I'll try to send you a little holiday cheer.)

Thank you to all of our family and friends who helped us get through 2011. (Mom and Dad, I love you so much.)

Happy holidays!

Being a Parent With Cancer Part 1: Talking With Children About Cancer

Just thinking about talking with Katelyn about cancer makes my stomach feel like I've swallowed a handful of her Squinkies (If you don't know what those are, be thankful. They bounce and roll into every unreachable nook and cranny in the house.)

My daughter has been aware that I've been sick, but at two years old, she hasn't been capable of comprehending the magnitude, or that all the events this year have been connected. I had hoped that as her brain develops, our continual openness and her attendance at many of my medical appointments will cause a gradual understanding that won't terrify her. After reading some of the below resources, which should be helpful for any parent with cancer, I've come to the conclusion that there still will need to be a difficult conversation down the road.

PCR Remission Test Result

The test came back negative (i.e., no blood cells with the chromosome transolcation that signifies APL). We are so, so relieved. Dr. Sharma said that we still need to figure out what's causing the pain. I told her I don't care, as long as it's not cancer, I don't care. 

Health Update

This morning my doctor rechecked my blood cell counts. They are all still normal, which is a huge relief, considering acute promyelocytic leukemia is a very aggressive disease. She drew blood for a PCR test, for which I may get the result as early as Wednesday.

This past weekend was the hardest my family's had since I came home from the hospital. For the first time in a while, we were worrying about: the the possibility of spending Christmas in the hospital; a bone marrow transplant (and losing any chance of having another child); the inevitable fear of "What if a BMT doesn't work?"; and would Katelyn have any memory of me?

A Thousand Better Ways to Spend a Friday Night

Yesterday evening my left side started hurting. Pain in the same area of my ribs that preceded my diagnosis last spring. When the ache hadn't dissipated by midnight, I called Dr. Sharma, who told me to get it checked out at the E.R. for peace of mind.

The CAT SCAN and blood counts came back normal, and there were no irregular cells when Dr. Sharma looked at a blood sample under the microscope this morning. However, she thinks it's worrisome that I'm having this same rib pain, so she'd like me to come into her office Monday to have blood drawn for a PCR test. The PCR test, which assesses the blood on a molecular level, is much more precise than a CBC (count of blood cells) or examining a slide under the microscope.

Being a Parent with Cancer Intro

Last night, I tried to entice Katelyn to read a picture book about a boy and his pet dragon. Unlike me, who would love my own dragon, Katelyn is not a fan. I flashed a page showing the boy walking Sparky the dragon on a leash. In response, Katelyn dumped out a tub of blocks and began to play. I flipped to the next page, which depicted Sparky being examined by a pediatrician. Katelyn ran over to the couch, climbed up next to me, pointed at the physician, and said, "Dr. K! Katelyn's doctor is Doctor K. Mommy's doctor is Doctor Sharma."

My child is more interested in doctors than dragons or blocks.

Although she is only two, this past year has left it's mark on her as well. She's accompanied me to so many of my doctor's appointments--not to mention visiting me in the hospital, that she thinks being examined by a doctor is cool. She looked forward to her two-year check-up with Dr. K for weeks, and didn't even flinch during her immunizations.

This evening, she went with me to Dr. Sharma's office for a blood test. Without prompting, she charged down the hall to the lollipop jar. When Lily pulled two purple rubber gloves from the dispenser, Katelyn tucked her chin to her chest and wouldn't look up. She knew what would happen next.

Twelfth Win for the Packers!

Packers vs. Giants

Thanks to a good friend of mine, my mom and I witnessed it in person.

My first hospital room in the leukemia wing last spring looked out on the Meadowlands (before I was moved to the ICU and then reassigned to a different room when my condition improved). From the eighth floor, I had a great view of MetLife stadium, though I wasn't exactly in the mindset to appreciate it. Not that I would have without under better circumstances, given my lack of interest in the Jets or Giants (sorry New Yorkers).

Book Review: Zahra's Paradise

 Zahra's Paradise, written by Amir and illustrated by Khalil (the authors have chosen to remain anonymous for political reasons), is a fascinating glimpse into Iran in the days following the uprising in June 2009. The first person narrative depicts one family's search for its missing son, who was last seen during the protests in Freedom Square. The intense emotions associated with the subject matter are supercharged through the book's graphic novel format.

Although the account is ficticious, it represents a composite of the repercussions that faced many Iranians following the uprising. Amir, an Iranian-American human rights activist, provides an insider's view of present day Iran, and Khalil's artwork is extraordinary. Throughout the novel, I found myself pausing to examine his intricate drawings.

You can read a sample chapter of the novel, which reached #5 on the New York Times Bestsellers list, at http://www.zahrasparadise.com./

The Marshmallow Shooter: a Great Gift that Benefits a Great Cause

Black Friday and cyber sales have been the craze this past week. Hopefully strong sales continue and give our economy a boost. Here's a way to preserve the Christmas spirit while holiday shopping: buy a marshmallow shooter from http://www.funontherunusa.com/.

No, the chemotherapy hasn't driven me completely mad. I have good reason for recommending a marshmallow shooter for your loved one this holiday season.

The company was founded eight years ago by a group of entrepreneurs who are now 16. A portion of the ambitious, hard-working teenagers' profit goes to charity. Their current recipient is the Tomorrows Children's Fund. This nonprofit provides support for children with cancer and funds cancer research. It has a partnership with the Hackensack University Medical Center, which is where I receive my treatment.

Much to be Thankful for

Happy Thanksgiving!

We have so much to be thankful for this year--our family, our friends, the birth of our nephew, all the support we've received, and my remission status.

There are many blessings to count today, including ten trivial ones below:

(Almost) Drug Free

Yesterday was my 15th day of ATRA--the last day for Round 1. Today is the first day I will have been (almost) drug free since my diagnosis. For the next two and a half months, the only medication I will be taking will be the Warfarin to prevent blood clots.

That means no headaches, nausea, wooziness, or fatigue for two and a half months. No struggling to function and no attempting to hide how bad I feel.

In January I'll have a cat scan of my liver to assess if I need to remain on the Warfarin. If my liver has repaired itself, my doctor may take me off the Warfarin. For a few days before I start the next round of ATRA, I could be completely drug free.

For those few days, it would be like none of this ever happened.

Except it did happen.

Psycho Parent Syndrome at the Rink

Yesterday at the ice skating rink, an incident of Pyscho Parent Syndrome did occur. But Ryan and I weren't the culprits.

When we arrived at the rink, Katelyn recognized the building from our test run the weekend before. "I want to do spins," she said. (We have a figure skating competition on the DVR at home.) So far, so good.

Rink 1 and the area surrounding bustled with pint-sized people wearing snowsuits and wobbling on their skates. Katelyn took her cue from them and allowed Ryan to put on her skates and helmet. He held her near the edge of the rink, and she asked him to put her down on the ice.

She "walked" across the ice with Ryan. Big stuff!

The instructor checked off Katelyn on her registration sheet and asked, in her Russian accent, how old Katelyn was. Ryan responded that she was two.

The instructor replied, "Wow."

From her tone, I'm guessing "wow" in Russian means, "These two must be Psycho Parents."

Psycho Parent Syndrome or Just Having Fun?

Today is Katelyn's first ice skating lesson. Two years old seems awfully young for skating lessons, and there's only a 50% chance she'll put on the skates. That does make us seem over-intense. I suppose if she's competing in the sport at age 15, and we admit to other parents (her competition) that we started her at two, we will be certified as psycho. If we told them her first lessons were held at the training ground for a past Olympic gold medalist, we'd completely ruin our chances of a reputation as fun-loving and easy-going.

But her competing at age 15 is unlikely to happen (especially if she refuses to get on the ice!). Neither Ryan nor I are the spontaneous type. Or rather, we didn't use to be. For us, this is spontaneous. A few weeks ago, Ryan had turned on the television to distract Katelyn from her nap-hangover. She was enraptured by an ice dancing competition. We decided to "do something crazy" and give it a try. The "home of the Olympic champion" rink happens to be the nearest to our house.

So while I do feel a little worried that this activity might be a symptom of Psycho Parent Syndrome, I am really excited to watch Katelyn and Ryan on the ice today, if they make it that far. We'll have fun today. And if she's not, we'll leave. That doesn't sound psycho at all.

Book Review: Mudbound

 

Hillary Jordan's Mudbound is a poignant literary novel that takes places in the Mississippi Delta during the Jim Crow era. Laura's husband, Henry, decides to uproot their comfortable town life and buy a farm in a rural area 40 miles from Greenville. New at the profession and the way of life, the white family develops a relationship with one of their black sharecropping families, the Jacksons. As a result of the deep-rooted racism in the region, the families' bond is defined by necessity rather than kindness or companionship.

Laura dislikes her new life and her father-in-law, who lives with them (and has a history with the KKK). She resents Henry for buying the farm without taking her happiness into consideration. Her despondency  and the racial tension between the two families are manifested when Henry's younger brother, Jamie, comes to live with the family. He is haunted by his experience as a bomber pilot in the European theatre of World War II.

ATRA Update

The headaches and nausea have faded.Only five more days of the ATRA pills and then I have a 2.5 month break from chemotherapy. Just in time for the holidays!

Reaction to "If I Die Young" by The Band Perry

Last night at the CMA Awards, The Band Perry won Best Single of the Year for the song, "If I die Young."

The song was released in the Mainstream Top 40 in May, a little over a week after I arrived home from my 40-day hospital stay. Somehow, despite its triple platinum success, I didn't hear it for the first time until this fall. It came on the radio as I was driving home from an appointment with my oncologist. I sobbed as I listened to the words:

If I die young, bury me in satin

Lay me down on a bed of roses

Sink me in the river at dawn

Send me away with the words of a love song

In an interview with The Boots, lead vocalist Kimberly Perry said, "We wanted to write a song about making the most of whatever time you're given -- whether it's two years, twenty years or two hundred. We really have gotten to live and love at our young ages. 'If I Die Young,' for us, is about if it all ends at this moment, look at what we've gotten to do. Whatever time we're given will be absolutely enough as long as we make the most of it."

Apparently, the vast majority of people view the song as romantic and positive. When coupled with the commentary about her purpose for writing it, I agree. Based on the lyrics alone, however, I don't find the song romantic at all. From my particular vantage point, as a cancer fighter, its sounds a lot like giving up.

Feeling the Effects

Day 2 of the ATRA pills.

The headache arrived, right on schedule.

What's taken me completely by surprise is the nausea.

During my prior ATRA courses, I'd been receiving the heavy anthracycline chemo. I'd assumed the nausea then was from the anthracyclines. Apparently, the ATRA affects me that way too.

I called the cancer center to ask if other patients experience extreme nausea with ATRA too. Yes, some do.

13 days and then seven more rounds to go. Sigh.

Remission Test Results

Chocolate cake recipe from Jennifer M.



Chocolate cake Sheila made in a cupcake bundt pan
 while staying with us in October



Chocolate cake-themed card from "meiner Deutschen Familien"

...yes... we did eat chocolate cake tonight.

Come Monday, It'll Be Alright

Hopefully those Jimmy Buffett lyrics will prove to be true. I should get the results of my remission test tomorrow. Also tomorrow, I begin taking the ATRA for fifteen days. If it has the same effect as the last two times, the headache will begin around four o'clock Monday afternoon.

We've been praying for a clean remission test result, and my doctor says it's highly likely that will be the case. If it is clean, however, I won't be quite as joyous as I've been post the last two PCR tests.

My grandma started a new treatment course this past week. So far, she hasn't had much in the way of side effects, which is excellent. I shouldn't worry about her because she is one tough cookie, and the most positive person I know. But I can't help it. I love her so much.

Also, one of the friends I've made this year, through our shared circumstances (young 30s, leukemia (She has AML M-1. I have AML M-3.), is sick again. She found out the beginning of last week that she has relapsed. She has young children, and is back for a long stay in the hospital. Knowing what it's like to be away from your family, I feel so bad for her. Though like my grandma, she is a fighter, and will be just fine.

People ask me how I've been so brave this year. I'm not a brave person. My answer is that I don't have a choice. Neither does my Grandma, nor my friend. You act brave because that's what you do for those you love, and those who love you.

The Living Wall

The Living Wall at the John Theurer Cancer Center

A common theme among cancer surivors is that they appreciate the little things in life more. Post cancer, a rose smells sweeter, a child's laugh more memorable, an expensive steak dinner more savory, etc. etc. etc.

So if I'm supposed to be more attuned to the small pleasures in life, how in the heck did I miss the plants covering a wall in the four-story atrium of the cancer center where I receive treatment? If those fronds were carnivorous plants, I would be dead. Just like a fly oblivous to a venus fly trap.

Best Halloween Costume Ever

This afternoon I had blood drawn for a PCR remission test (described at the end of Go FISH). I'll receive the result next Monday.

Ryan and I are more nervous than we should be. The oncologist says the test should show that I'm cancer free. We believe him, mostly. But there's a part of us that can't stop worrying. A year ago, we thought nothing could go wrong. And then something did go wrong.

Welcome Chase Robert!

Announcing... Chase Robert... our beautiful, healthy new nephew, born four weeks early and weighing in at 6 pounds, 15 ounces, and 19 1/2 inches tall.

Congratulations to Jeff and Jen, and big sister Elise!

For four weeks early, he is a big boy. If he turns out anything like Jeff, his job of being Elise's protective brother will be an easy one.

We cannot wait to meet and hold him. Katelyn has already added Chase to her prayer list. Currently, he comes after "God bless Sleep Sheep" and before "God bless Mickey Mouse." Once she meets him, I'm sure he'll move up the list.

We're so happy that our family has been blessed with this adorable addition.

So Much for Pumpkin Picking



My impatiens, patiently waiting for the blizzard to stop

For the past two months, during the treatments and their side effects, I had been looking forward to October 29th. We had reserved the nearby farm's 4:00 pm hayride slot for a pumpkin picking party for Katelyn and her friends. Conveniently, her friends' parents are our friends. So not only did the prospect of the party give me something more pleasant to think about than cancer (without having to do any of the prep work), it was supposed to be a way to celebrate the end of this phase of my treatment with our friends and my parents, who have done so much to help us.

Of all days for a freak October snow storm to hit, it had to be October 29th. Friday was beautiful. Sunday is beautiful. As the snow fell midday, we debated whether the developing conditions warranted calling off the party, which the farm had said we could hold inside. I felt like standing in our front yard and yelling at the sky, "Seriously God, can't you just give us one break this year?" That's what I would have done if I were an actress in a movie.

Junk Mail

Friday I received a form letter in the mail announcing that a certain hematologist was switching practices. I was only his patient for two days. He was the one who examined my blood sample and prepared transfusions to have on hand in the operating room before the high-risk procedure to remove Lily. He was also the one who discharged me from the hospital the following day, despite my complaint of acute side pain and my abnormal blood counts.

Another hematologist, who knows him, has told me he felt terrible for missing my diagnosis. I am sure he did. It took us weeks of effort to get my records from those two days. Maybe there was some fear of litigation. It was unfounded. His form letter Friday brought back a flood of memories that kept me up that night.

Climbing Back Up

The worst is over. Hopefully forever. My white blood cell count must be higher by now, though I didn't have the tell-tale bone pain like I had as I started to recover during the last two rounds of chemo.

As long as I don't relapse, I am done with the heavy chemo forever! Over the next two weeks, I'll continue to feel better and will regain my strength.

November 7th, I begin consolidation, which consists of ATRA pills (the migraine medicine) for 15 days every three months for two years.

The Bottom

Dr. Goldberg told me at my appointment today that I've hit bottom. No, not in the "my life is in shambles and I've taken to the bottle" sense. My white blood cell count is 1.4 (average healthy range is 4.3 to 10.8).

Come on White Blood Cells, I Need You

My blood cell counts are nearing their lowest levels.
Katelyn woke up with a raspy voice and a temperature of 99.9.

I'm so thankful Sheila is here for the next week. She will make it so much easier for me to avoid my daughter. Wow, that pronouncement sounds so wrong. (Katelyn, I love you, a lot, even though you don't cover your mouth when you cough.)

100.5's the magic number. That's the body temperature at which I'm supposed to contact the cancer center. It's also the number I'm hoping Katelyn's temperature stays under, which would suggest this is just a blip for her. It's hard to see her not feeling well. I can't imagine what it's been like for my parents this year.

Kelly the Caregiver



L: Shelley , R: Kelly
(pre-APL)

This weekend, Kelly, my close friend since age six, stayed with us. It was a blessing to have her helping us, given I wasn't exactly in prime shape. Katelyn took an instant liking to her, and declared Kelly "her" friend. By the end of the weekend, Rob was also referring to Kelly as "his" friend, since she was a lot more fun to hang out with than I've been.

Saturday evening, Kelly whipped up a meal from the cookbook, Eating Well Through Cancer. As we were sitting down to dinner, I asked her what section of the book her Mexican chicken casserole had come from. (The recipes are categorized by which side effects they can help alleviate.) In addition to the nutritional advantages, if there was any psychological benefit from eating a meal prescribed by a chemo cookbook, I wanted to realize it.

Kelly picked up the book, flipped through it, and said, "Oh, I didn't notice the recipes were grouped that way." She located the Mexican chicken casserole, and laughed.

"What's it supposed to help with...?" I asked with trepidation.

Book Review: Eating Well Through Cancer

 

 

Holly Clegg's "Eating Well Through Cancer" is a great aid for caregivers and patients. Not only are the recipes simple and appetizing, but the book takes a healing approach. The recipes are organized by the side effect they are intended to help mitigate. For example, there are sections for patients with Neutropenia (high fevers) and those needing high caloric meals to help them gain weight.

I am not much of a cook, even more so in my present state, but my friend, Kelly, made two of the recipes this weekend (pictured below). They were both delicious, and once I am recovered I will try some of the other recipes. I don't need chemotherapy as an excuse to test out some of these appealing meals.

Pictures of Kelly's creations:

Sometimes, Life Can Be a River Too



Compliments of Beth Hornby, Former University of Minnesota Rowing Teammate

 
While my forearms were wrapped in hot compresses to ease the continual burning sensation from the Daunorubicin infusions, I saw this photo, and it completely relaxed me. Beth snapped it last week along the Mighty Mississippi in Minnesota. By no means am I capable of exerting myself in an 8+ shell like that today, but if I close my eyes, I can almost feel the beauty and stength of it...

The BRCA Gene for Blood Cancer - GATA2

In September of this year, researchers announced that they have discovered a gene mutation that can cause, among other things, leukemia. The study, published online in the journal Nature Genetics on September 4th, explained that a mutation in the GATA2 gene has been associated with diseases relating to the development of white blood cells, including acute myeloid leukemia.

Scientists Find Gene Link to Blood Cancers

GATA2: Gene Defect that Predisposes People to Leukemia Discovered

As far as I'm aware, I have no familial history of leukemia. The article states that a genetic tests is/will be available to determine if a person is a carrier of the GATA2 error.

Last Dose - Hooray!

Dad sitting next to me as I finish my last dose of Daunorubicin.

Overall, today's session went better. On the way home, I didn't need the bucket that Dad had stored in the back seat of the car, just in case... Both my arms are really sore from the strong chemical being pushed through them--the left from the IV on Monday and the right from yesterday and today. The chemo didn't leak into my flesh, but it seemed that my veins were too small to flush it throughout my circular system quickly, so they spasmed. When I received the Idarubicin in the hospital in the spring, it was injected through a PICC, so I didn't have this issue. Over the next few days, applying hot compresses to my arms should help.

Final Day of Daunorubicin

Today is my final dose of Daunorubicin, ever! I'm near my "lifetime limit" of the class of drugs, so even if I were to relapse, I wouldn't be given more of the glowing red juice. In the off chance I have a relapse, my bone marrow would be prepped with other drugs--presumably ones that also glow--for a stem cell transplant.

The plan is to avoid that. The plan is to finish this Daunorubicin cycle and the two years of the maintenance drug, and move on with living.

Moving Past Day 1, onto Day 2 of Daunorubicin

I wish I could run, in a drop-dead sprint, through these next few weeks. Be done with this, having felt nothing more than sore calves and skinned knees from that one time I bit it when I didn't see the crack in the pavement.

Unfortunately, I haven't been able to run in years, and since any lingering tumor cells are hiding within my bone marrow, they would be traveling just as fast.

Yesterday's infusion didn't go as well as the three in September. The catheter was in the vein in my left arm correctly, so the Daunorubicin was flowing into my bloodstream, not into my flesh where it would cause damage. But the veins in my left arm had their own adverse reaction to it. The top and underside of my forearm were experiencing a burning sensation. So was my left shoulder. The nurse slowed down the injection and applied hot compresses, but I didn't begin to feel better until she'd finished the two chemo vials and had given me pain medicine.

Ten Tips for an Outpatient Chemo Infusion

As I get organized for this round of my cancer treatment, I thought I'd share a few tips for anyone who stumbles upon this link who's just begun his/her journey toward being cured.

Toughened Up

During a family cruise vacation several years ago, we participated in a shore excursion to Stingray City in Grand Cayman. Everyone was issued snorkel gear and a handful of dead squid to feed the rays.

The creatures, gliding below, looked so serene. If you put out your hand while holding a piece of squid, a ray would zoom by and grab the squid with the mandible on its underside.

I had my face in the water, admiring the animals' agility, when I felt a sudden, acute pain. I stood up, ripped off my snorkel mask, screamed, and began to cry. My family swam over to me, an all-out sprint with the aide of their fins.

Brooklyn Bridge Light the Night Event - Pics

We had a great time at the Leukemia and Lymphoma's Light the Night Brooklyn Bridge event last night. It was quite crowded, which is a good thing!

We did have to dodge the Occupy Wall Street protestors on our way to the South Street Seaport (ironically, Barclays Capital and Goldman Sachs were among the largest donors at the LLS event).

The evening was inspirational, marred only by the news of the loss of Steve Jobs.

Thank you so much to those who walked with us (pictured below), and those who donated (Mary Lou & Craig, Aunt Lynn, my parents, Ayarza, and Nicole).

FR: Julie, Erin, Laura
BR: Nicole, Molly, Shelley, Katelyn, Ryan

Train of Thought

A conductor on my train ride home yesterday evening hit on me. It took me by complete surprise. Cancer patients generally are not the target of smooth dudes, but I guess my hat looked like it was meant to provide warmth, given the cool temperature. He called me, "beautiful."

My immediate reaction to his compliment: "No, I'm not. I have cancer." I wanted to take off my hat and say, "Look at me. I'm not beautiful. I am broken."

Light The Night - October 5th

 

 

If you'd like to join our family this Wednesday evening for the Leukemia and Lymphoma Society's walk across the Brooklyn Bridge, please see the Event Details, and let me know, so we can coordinate meeting up.

Check-in begins at 5:30 p.m., but the walk doesn't start until 7:00 p.m. If you'd like to come but can't make it until 7:00, I can either check-in for you, or you can join us without having registered.

** A special thank you to Mary Lou and Craig for their donation, and to Lauren, who is organizing a team with her school friends to walk in the October 29th event in Santa Clarita, California.

 

Book Reviews: "Caught" and "Promise Me"

This year, I discovered Harlan Coben. "Discover" is really not the appropriate term, given he has 50 million books in print worldwide. I was, however, reminded how suspenseful and addictive his thriller mystery novels are. It takes a lot for me to want to stay in the infusion chair, with the needle in my arm, for a single moment longer than necessary. Yet when I was reading "Caught" and "Promise Me," I would lose track of time, and continue to read in that same chair once the nurse had removed the IV.

Hollywood, You'll Have to Wait

The celebrity testimonial is a common (and effective) form of advertising. For example, the objective of this Louis Vuitton advertisement is to convince me that if I buy a Louis Vuitton tote bag and travel to Cambodia, I will be as beautiful as Angelina Jolie. Or maybe, just maybe, I'll believe that buying the tote bag will be enough to make me feel like I'm Angelina.

Nope, sorry, I'm too smart for that one. I have, however, fallen victim to a different type of celebrity testimonial. Since I lost my hair, a good friend of mine has been sending me pictures of starlets, in fancy evening gowns, who have blonde, pixie haircuts.

As my hair had been growing back, I'd been picturing myself with one of those trendy, short, blonde styles. Unfortunately, the imagination didn't stop there. I had myself convinced that once I'm able to have the haircut, I'll actually be a glamorous Hollywood star, just like the celebrities in the forwarded photos from my friend. 

Light the Night - Brooklyn Bridge, October 5th



The Brooklyn Bridge Light the Night Event, from the official website

Next Wednesday evening is the Leukemia and Lymphoma Society's annual New York City "Light the Night" event. It is the organization's fundraising alternative for those who would prefer not to run 26.2 miles or bike 100 miles.

Since it will take place during the one week I should be feeling well, before I start the next round of chemotherapy, we've decided to make the fundraiser a family outing.

I don't have the energy to actively fundraise for this, and I have no desire to ask for more from those who've been so good to us, but if any local friends (families welcome!) want to walk with us, we would love the company.

To join us, register at the bottom of the page at the following link: Team Shelley

Event Details:

Do I Have to Eat that Piece of Cheesecake?

Well, I could probably convince myself to force down a piece of cheesecake. The balanced meals have been tougher. I had a follow-up appointment today. Since Day 1 of the Daunorubicin two weeks ago, I've lost 5.5% of my body weight.

Dr. Oz and Apple Juice

This past week, Dr. Oz launched an "extensive national investigation" into the arsenic content in popular brands of apple juice sold in the United States. Details can be read here: Dr. Oz and Arsenic in Apple Juice.

Dr. Oz claims that some of the samples his contracted lab analyzed contained more arsenic than the FDA's allowable limit for water of 10 parts per billion. The FDA's limit for apple juice is 23 parts per billion, because the arsenic found within the juice is a mix of the harmful inorganic arsenic and less harmful organic arsenic. The samples with higher levels predominantly came from other countries, where arsenic is more prevalent and testing is less stringent.

His findings have stirred up a controversy amongst the FDA, juice drinkers, and himself. As a media figure, whose goal is to increase viewer and readership, he's found a winner with arsenic in apple juice. That said, of course I think it's important for consumers to be aware of what they're consuming, and for the FDA to adequately regulate those products.

For someone who was fed Arsenic Trioxide-- an inorganic ("harmful") version of arsenic-- 50 times this past summer, the current debate has an element of irony and amusement.

So Far, Only a Tropical Storm

The pain from my bone marrow regenerating has mainly occurred at night, in my back. It's been bad, but not comparable to the agony I felt last spring, which is very encouraging.

I am still feeling completely exhausted. Yesterday I napped for a total of four hours, and today I woke up at 10 a.m. On a bleak rainy day like today, taking a nap while my body heals doesn't sound so bad...

In the top left column, I've added some links to pages that will evolve. Just now, I wrote the Gratitude page. I'm sure I'm missing a lot of people I should be thanking, but I can add names over time. So much of this experience has been a blur, so I apologize if I haven't acknowledged everyone I should have. Everyone has been so amazing; we are truly blessed to know so many caring people.

If you have a good addition for the Faith and Inspiration page, please send me a note via email, Facebook, or a comment here.

Waiting for Bad Weather

 

Actually, this is more like waiting for a hurricane, but I don't want to spread a false rumor that another real storm is brewing.

After my Idarubicin chemotherapy last spring, I experienced tremendous leg pain as my bone marrow regenerated with the help of a booster drug. This morning I woke up with back pain. I told the nurse about it at my appointment today, and she said it's likely an indicator that I will be experiencing a lot more pain over the next few days as my bone marrow regenerates after being knocked out from the Duanorubicin.

The back pain reminds me of those first winds before Hurricane Irene struck. We knew we were getting bad weather, but we didn't know how bad, and there really wasn't much to do but wait for it to strike. Hurricane Irene turned out to be less severe than the media had predicted it to be. Hopefully this bone healing process turns out to be nothing more than a tropical depression.

Marathon-tired without the Marathon

This is how tired I feel today...



2003 ING New York City Marathon

The appropriate completion of that thought: "This will be over soon and I'll be running another marathon, this time to raise money for Team in Training."

 

The actual completion of that thought: "No way in h*ll am I ever running another marathon, but I'll sponsor anyone who does."

ATRA Over

I took my last dose of the ATRA pills, which cause the migraines, last night. !!!
Hopefully my migraine this morning will be the last one I have until I begin the round in October.



Test Video... A New Way to Help Others

What better way to stop feeling sorry for myself than to help others. (Especially as I'm lying here, nauseated, tired, and with a crushing headache.) Throughout the past half year, I've met several other patients diagnosed with blood cancers and other types of cancer. I've become part of their support networks, which has been rewarding.

Recently I came across an opportunity to positively impact more patients who are stumbling through a cancer diagnosis. Wegohealth is an online health community that provides an outlet for people like me to reach others who could use some tips and encouragement.

Below I've posted a link to a short video

Book Review: The Kitchen Daughter

In Jael McHenry's debut novel, The Kitchen Daughter, 26-year-old Ginny grapples with the sudden deaths of her parents through an age-old coping mechanism with a surprising twist. Throughout the heroine's life, she has relied upon food imagery and her culinary skills to control those situations that are difficult for one with Asperberger's Syndrome to handle. After her parents' passing, when she is truly on her own for the first time, Ginny discovers her culinary gift consists of more than just serving up scrumptious dishes.

Dear Chemo, Thanks for the Reminder

I'd begun to forget what the Idarubicin last spring had felt like. I'd been letting myself forget I'd had cancer.
This week has been an unpleasant reminder.

Today I'm still dealing with bouts of nausea and migraines, and the fatigue is starting to set in. On the bright side: the injection drug doses are done for this round. Now all I have left to do is finish the ATRA regimen and recover, which consists of perusing the TV Guide on my iPad, reading, and staring off into space. Maybe at some point I will actually turn on the television.

I have to keep remembering that this will keep me cancer-free. Soon enough this will just be a page in our family's history. Too bad our family history isn't like a real book, in which we could skip ahead to a more fun passage. Conversely, I can flip back to the great time we had in Florida two weeks ago. I'm already starting to feel better thinking about it....

Double Rainbow

This evening we went to the doctor to have her give me the Neulasta injection. The Daunorubicin I've received over the past three days is wiping out my bone marrow cells. As they regrow, the Neulasta should spur them to produce white blood cells to help me fight infection. The Neulasta is similar to the Neupogen I was given in the spring that gave me horrendous leg pain.

On the way home, we saw a double rainbow stretching across the sky. Hopefully it was an omen that I won't have a repeat of the side effect.

Daunorubicin Day Three

Today was the third and final dose of the glowing red juice for this round. I take the ATRA pills through Sunday and have the injection of Neulastin tomorrow night. I should reach my nadir, in terms of low energy and low blood counts, around mid next week. Feeling pretty tired right now though.

This is the Meditation Terrace outside the Infusion Suite.
Seems like the Infusion Suite is the more popular place to be seen.

Thank you, Vanessa, for taking me to my appointment today and for everything else you've done.

Daunorubicin Day Two

Two days down, one to go in this cycle. Then I recover for three weeks. The nausea has been worse today, so the doctor put me on a stronger anti-nausea medicine before my Daunorubicin injection this afternoon. The ATRA headaches persist, but the pain killers to help with those cause nausea. Best solution I can think of is to take a nap.

Thank you to my friend, Danielle, who took me to the appointment today. She learned the hard way that because of all these medicines, I'm not in a condition to give accurate driving directions.

What's that saying? A picture's worth a thousand expletives?

At summer camp while I was a kid, Kool-Aid was called, "Bug Juice." For obvious reasons. A cousin of the drug being administered to me in the picture above has earned the nickname, "The Red Devil." Also for obvious reasons.

Daunorubicin Day One

Today I started the week of ATRA pills and the three days of Daunorubicin infusions. I already have a crushing headache from the ATRA and nausea from the Daunorubicin, but so what. Pain is temporary, and hopefully remission will be forever.

9/11

IVIG

I received the intravenous immunoglobulin this morning. When we got home, I took a two hour nap. The infusion went smoothly, though now I feel a bit like I have the flu.

Dr. Goldberg said he hasn't seen an immunoglobulin deficiency as a side effect of Arsenic Trioxide in other APL patients. So this might not be from the arsenic. Hmmm.

The extra antibodies should help me through the chemo round that starts Monday. In the beginning of October, they'll test my IgG level again. If it's still low, I'll have another infusion then. This winter we'll address what it means if my level appears to be chronically low. Not worth worrying about it now.

Blood

Everyone's heard of blood drives. Many have rolled up a sleeve and participated (I have, though I won't be able to ever again.). Some can't participate because of health reasons, while others are afraid of needles. Though it costs nothing, giving blood is a generous donation. Albeit an abstract one. You never see the person whom your blood benefits.

Thus far, I've received around 40 blood product infusions. That's 40 people who helped keep me alive. They did so without knowing me. I wonder if any of them thought about who they might be helping while they watched a nurse jab them with a needle (or looked away).

I wonder who they are. Whose platelets have been swirling through my blood stream?

"Have a Magical Day"

Last Thursday, we took Katelyn to the Magic Kingdom in Disney World. It was a fantastic day, followed by four more great Florida days. Exactly the vacation we needed before the chemotherapy next week. My parents have been helping us so much this year, and Ryan has been an amazing husband and father. It was so nice to have fun with them away from the doctor consultations, infusion appointments, and household chores with which they'd been involved. I am so lucky to have so much support.

When we first entered the Magic Kingdom, a "cast member" from Cheyenne, Wyoming, who scanned my ticket, said, "Have a magical day." Despite my great mood, the phrase made me pause. When is the last time someone told you to have a magical day? It's not that I didn't want us to have such an experience. On the contrary, I was already grinning at Katelyn's excitement over spotting Cinderella's castle. It's just that it's an odd greeting. Try it out on a colleague or a store clerk, and you'll agree with me.

As silly as the expression sounds, we did have a magical day. Rather, a magical weekend.

Blood Test Results

First and most importantly, my PCR remission test showed that I am still in remission. Fantastic!

One of the other blood tests came back showing a slight snag in my recovery. My immunoglobulin (IgG) count is low (i.e., I have an antibody defiency). This explains why my cough/cold has persisted for six weeks.

The treatment to correct the deficiency is called intravenous immunoglobulin therapy (IVIG). Over a period of six hours, I will receive an infusion of antibodies donated from between 3,000 and 10,000 healthy donors. At this time, I don't know much more than that. The registered nurse at the cancer center, who informed me of the irregular test result, said they would prefer to discuss the treatment and possible side effects with me in person.

Hurricane Irene

Scattered tree branches on the lawns and a few downed trees are the only evidence that Hurricane Irene passed through our area early this morning. The sun shone for a few hours this afternoon, though it turned rainy and windy again. We aren't amongst the 5 million who lost power, and since our house is on high ground, we haven't had issues with flooding. Hopefully those less fortunate are able to stay safe and have power restored quickly.

While I am thankful Irene wasn't as viscious a storm as she could have been, Katelyn seems to be disappointed. Despite her limited sentence structures and vocabulary, she expressed that she wanted Tornado Irene to come. Why? Her obsession with the Wizard of Oz continues, and the only way to get to Munchkin Land is by riding a tornado. Although it takes retraint not to react to Lily's loss by always making Katelyn happy, in this case, it was very easy to say, "You don't always get what you want."

We are thankful to have been so fortunate and are praying for those who have been hurt by this storm.

Good-bye Arsenic, Hello Irene!

This morning I completed my 50th and final dose of Arsenic Trioxide. Just in time! If I weren't done, and Hurricane Irene stays on its current projection, it's unlikely I would be able to get to Dr. Sharma's office on Monday for another infusion.

I won't miss the arsenic, but I will miss Dr. Sharma, Lily, Shannon, and Lynette. Dr. Sharma is a brilliant and caring oncologist. I was more than a patient to her-- I was a person. Nine in the morning, on the Fourth of July, she met me at her office because she didn't want me to miss a day of treatment.

Two weeks ago, I called her office because the site of my IV infusion from that morning had begun to bruise. Bruising is one of the symptoms of leukemia, so I was worried I might have relapsed. She wasn't at her office, so Shannon took a message. Five minutes later, Dr. Sharma called me from the hospital to reassure me the bruising wasn't from leukemia. She could have addressed my concern the following morning during my appointment. But she cares, so she called.

I will also miss the other members of the Cancer Club with whom I became friends. With these friends, when you first meet each other, you skip the pleasantries. You learn about each others' diagnoses and treatment programs. It's the standard ice breaker. Then, you learn about their families. Finally, once you really know each other after multiple infusion sessions in the same room, you talk about the weather. I hope and pray each of them wins her battle.

The result of my PCR remission test hasn't come back yet. Maybe Monday. At least I will have a hurricane to distract me during the weekend wait. The storm is expected to hit here Sunday.

Chemo Ahead

The other day, I noticed a man wearing a fundraiser T-shirt with an imprint of a traffic warning sign that read "Cure Ahead" instead of "Curve Ahead." Very clever. As I'm finishing my tenth and final week of Arsenic Trioxide, I've been thinking about what lies ahead on my path to complete remission. My curve this fall is the chemo that will lead me to being cured.

My schedule:

An Outpatient with Impatiens

In April and May, I was an Impatient Inpatient.

Now I'm an Outpatient with Impatiens.

God has been listening to our prayers.

Dear Cancer...

Throughout the past few months, I've had a number of friends express admiration for how positive I've been, particularly in this blog.

I have tried to be as positive as possible, but it's impossible to be positive 100% of the time. Some days, the first words I write are not the ones that appear in the final post. When I am having a tough day, those first words are filled with fear and anger.

The Delete key erases those thoughts, and forces my mind to replace those words with more positive ones. What I've posted hasn't been a lie. It's the outcome of positive self talk. By convincing family and friends that I'm in good spirits and everything is going to be okay, I convince myself.

Last week, I posted my raw emotions on the social networking site I Had Cancer. Its members know how hard it is to be positive 100% of the time. The site has a page where you can post a message starting with "Dear Cancer." Some people rant. Others brag that they're kicking the disease's *ss. Those that have really mastered positive self talk thank cancer for its silver lining. This is what I posted last week:

Thank You

Sarah, congrats and thank you! And thank you to those who made a donation!

Thank you to everyone who thought of us yesterday, and thank you to everyone who's been including us in your prayers.

That's a lot of thank yous, but not nearly enough to adequately express our gratitude for the suppport we've received from our family and friends.

Love you all.

Sunday, August 14th

August 14th was supposed to be our baby's due date. Or rather, Lily's birthday. Maybe she would have been born early, and I'd be holding her right now.

This Sunday is also Sarah's 1/2 marathon to raise money for the American Cancer Society in my honor.

Sarah's American Cancer Society Fundraising Page

It's also the date of the "bar-raiser" fundraiser for Jeff Tomczek in New York City at The Kettle of Fish from 3-6pm. Details can be found at the Facebook page, Bar-raiser for Jeff Tomczek. My mother is bringing a pink Aaron Rodgers jersey to donate to the raffle.

Another of Katelyn's favorite library books is The Very Lonely Firefly, by Eric Carle. The firefly flits through the night, looking for the lights of his family and friends. When he finds them, he's no longer alone. This Sunday, it will be nice for us to be surrounded by the lights of our family and friends.

G.I. Gene

An army genetically bred and trained to kill tumors.

Sounds like science fiction.

It's not, and with the breakthrough this week, it could become a common cancer-fighting technique in the not-so-distant future.

Doctors at the University of Pennsylvania have released a research study that may prove to be the biggest advancement in the fight against cancer in decades. They treated three patients with chronic lymphocytic leukemia (CLL) with their own blood. CLL is the most common type of leukemia, and historically has not been beatable without a bone marrow transplant. Even after a bone marrow transplant, many patients relapse.

Of the three patients treated with the UPenn doctors' bold strategy, two have been in remission for a year, and the third has seen a 70% reduction in tumor cells.

Three success stories doesn't guarantee the technique will have as high a success rate in a larger clinical trial, and it's too early to know if the two cured will stay in remission. The results, however, are good enough to attract research grants and the drug companies. The breakthrough could lead to cures for the blood cancers, ovarian cancer, pancreatic cancer, brain cancer, melanoma, and potentially others diseases. Instead of two and a half years of drug therapies, someone diagnosed with APL ten years from now might be cured with a single injection. Amazing.

For each patient, the doctors drew blood and collected the T-cells, which are a form of white blood cell. The doctors genetically reengineered those cells to target and destroy tumor blood cells. They injected the the white blood cells with "G.I. Genes" back into the patient. One to two weeks later, the patient experienced severe flu-like symptoms, which were the result of the altered white blood cell army killing the tumor cells.

The below link provides more details on the study:

New leukemia treatment exceeds 'wildest expectations'

One to three injections to cure leukemia or another cancer instead of the regimen those of us in the Cancer Club must endure sounds too good to be true. Cross your fingers and pray that a decade from now, legions of miniscule soldiers fighting our cancer battles for us will no longer sound like science fiction.

Pretty or Pretty Irrelevant?

My hair is half an inch long now. Okay, that's a slight exaggeration, but it's a good quarter inch.

One of my new friends, who was diagnosed with APL this year, just completed her second round of outpatient Daunorubicin chemotherapy. Only some of her hair fell out again. Her family says its not noticeable. Great for her! Hopefully I will fare as well.

My hair is almost long enough to look like an intentional haircut. I'd rather not have to start over. Bald during the summer keeps me cool. Bald during the winter would be quite chilly. I'd need one of those shearling lined bomber hats with the ear flaps.

I've been debating whether to post a picture of me without a hat on. I'm comfortable with the look, and so is my family. A compassionate cancer survivor whom I met this year gave me her blond wig, since her hair has grown back. When I put it on and approached Katelyn, she started shrieking. She didn't stop crying until I'd removed the wig. The other week, I asked my husband if he could change one thing about me, what would it be. He said, "I'd want you to have short hair, which you already have, so I'm good."

In general, I've become comfortable not wearing a hat around those people with whom I'm close. But why am I so afraid to post a picture or walk through the grocery store without a hat? It's not that I'm afraid to have strangers realize I had cancer. It's because I'm scared they will think I am ugly.

It's a ridiculous fear. I shouldn't worry what others think of my appearance. My attitude and what I do with it are far more important than how I look. My parents raised me to focus on achievement rather than appearance, and we are doing the same with Katelyn. When she masters a new skill, she yells, "I did it." She has one baby doll, but also a toy airplane, firetruck, motorcycle tricycle, and a basketball hoop. Her favorite library book this week is called, "I Stink," by Kate Mcmullen. It's about a garbage truck. She doesn't know any of the names of the Disney princesses.

We're not intentionally withholding the princesses from her, or anything else girly. We smile when she blows kisses to the garbage truck. If she becomes interested in the princesses, we'll play along. We want Katelyn to use her imagination any way she wants, and to have fun. Throughout her life, however, she will be inundated with the message that pretty is important. Right now, if she'd rather hear a story about a garbage truck than learn Cinderella's tale, than that's what we'll read.

There is so much emphasis in our society on the way girls look instead of what they accomplish. I see evidence of this in the way girls have reacted to the lack of hair my hats signify.

(True) True Grit

"True Grit" became a buzz phrase this spring when the Coen Brothers' remake of the 1968 film adapted from the Charles Portis novel was nominated for ten Academy Awards. Since Sunday, when I spent the day with my younger brother, Matt, the expression has been buzzing in my head. In the story, U.S. Deputy Marshall Rooster Cogburn is described as having "true grit." But his fortitude is fiction. Matt has reminded me that there is such a thing as (true) true grit.

Last week, Matt was promoted from his role at Nougatine to Garde Manger at an affiliated restaurant, Jean Georges-- the premiere restaurant in the famous chef's portfolio and one of only nine restaurants in the United States to have earned three Michelin Stars in 2011. For any aspiring chef, Jean Georges represents the pinnacle of employers. Understandably, Matt's very excited, which made his accident Saturday even harder to bear.