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.