Monday, August 29, 2011

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.

Sunday, August 28, 2011

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.

Friday, August 26, 2011

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.

Tuesday, August 23, 2011

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:

Sunday, August 21, 2011

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.

Friday, August 19, 2011

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:

Monday, August 15, 2011

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.

Friday, August 12, 2011

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.

Thursday, August 11, 2011

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.

Sunday, August 7, 2011

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.

Thursday, August 4, 2011

(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.