Big Hair Day Tomorrow

Tomorrow I will visit the hair salon for the first time post chemo.*

When I made the hair coloring appointment, the receptionist asked if I need a haircut as well.

I replied, "There might be a few hairs that need to be cut."

Awkward silence, while I struggled to find the right words.

"Okay then," the receptionist said, "We'll see you tomorrow at two."

I plan to go blonde (my chemo hair is brown), not because I have a burning desire to return to the former me. Rather, it will be easier to start light and dye it darker next time than to do the reverse. As I mentioned in my entry, A Bald New Approach, the chemo causes hair to grow weird for several months post treatment. Once the chemo stops messing with me, I'll want to be rid of this hair, so why not have some fun with it first?

After blonde, I might go auburn, but not black. Ryan is convinced I will look frightening with black hair. We've had to accept so many changes this past year, that if he believes black hair is one adjustment too many, I will spare him that. 2012 is about trying to quiet our fears, not creating new ones, and black hair probably would look terrifying on me.


* Pics to come, but only if it looks good.

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."

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. 

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.

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.

A Bald New Approach

While in the hospital, having no hair was the "in" thing for the leukemia wing. Since I've returned home, I've been more conscious of it. Before I share my thoughts on the looks' pros and cons, here's a review of my hair's history and future:

Pre-leukemia

Killing the Wicked Witch of the West (Phase Two of Treatment)

Ryan's twin brother, Derek, sent Katelyn the movie, The Wizard of Oz. We received it today. She knows the movie; it's the only full-length feature she's ever watched. One afternoon, during my hospital days, Ryan turned on a DVRed version. He needed some down time, and he received it. She sat on his lap and watched the entire movie. She cried from impatience during the commercials, even when Ryan triple fast-forwarded them.

Today I had my appointment with the head oncologist. While in the hospital, it had felt like the end goal was getting a high white blood cell count so I could go home. I just had to follow the yellow brick road, see the wizard, and I'd be whisked away. Although the doctors had mentioned the other phases of the treatment, I hadn't focused on them. Today, I was forced to do just that. We discussed Phases Two and Three. I start June 6th. The two weeks before then will be continued recovery from the treatments given to me in the hospital. The good news is that I am starting to feel better and getting back to normal in terms of energy. I can't wait to start working again.

The continued treatment schedule is more involved than I had let myself comprehend while in the hospital. To preserve my sanity, I hadn't let myself think about it. The second part of the discussion today centered on the tests for the presence of cancer throughout the treatment schedule and beyond. Today, two realities were forced upon me: 1) There are more bricks on the treatment road 2) I have to live with the fact that I have/had cancer. My life has changed. There will be the fear of bleeding/clotting that indicates Leukemia, and there will be the holding of breaths as we await the results of tests that tell me whether I am still in remission. At five years, I will be considered cured. My plan is to throw away any lingering fears that day (And clean out my closets. If I am strong enough to get over the fear of cancer, I am strong enough to get rid of that shirt from 2002.)

Despite my realizations, the meeting was very positive. In the first weeks of the disease, Dr. Goldberg, the head oncologist, had scared me about the dangers of that time period. He'd terrified me with a reference to a young woman who'd died. I had joked to the other oncologists that his name should be Dr. Gloomberg instead of Goldberg (in retrospect, maybe I shouldn't have joked about such an important person, but there were narcotics involved). Today, he said, "I heard about your nickname for me. Those things I said were to scare you to make sure you were being careful not to fall and doing everything we needed you to do during that critical time period. This is a happy meeting. You are in a good place right now. I am confident your test will come back next week showing your are in remission."

If Dr. Gloomberg is happy right now with my progress, that's how I will feel too.

The Remaining Bricks in My Road to Being Cured

The below is the basics of my treatment schedule. It assumes that my test comes back next week showing that the majority of the cancer-causing cells have been killed. The objective of the treatment is to wipe out any lingering cancer-causing cells that could cause a relapse.

- Recovery from Phase One, 2 more weeks. I am still weak and tired, but will continue to feel better. The drugs administered during my stay were very tough on my body, so not only are the bones and blood recovering, but my muscles are weak from lack of use. 

- Arsenic - 5 weeks of 5 days a week, 2 weeks off, 5 weeks of 5 days a week, 2 weeks off. This is administered through IV; is outpatient; and takes about 45 minutes to receive the dose. There are some side effects the first week, but after that, I should feel fine. I asked the doctor if this is the chemical used to kill rats. His response: "No, but actually, you are already on the drug that's used for that- Warfarin." (blood thinner) This is useful information to have in case I ever do see a rat in our house.

My doctor mentioned that he's currently treating a golf pro in this stage. The pro gives lessons and gets his treatment at the end of the day. If a pro can give lessons, it should be a breeze for me, who has a desk job.

- Daunarubicin -  3 days in a row, 1 month off, another 3 days in a row, 1 month off.  This is the chemotherapy. It is in the same family as the heavy chemo, Idarubicin, that I had in the hospital. My treatment may wind up being Idarubicin again because they are having issues with supply shortages. During these two months, I will be experiencing some side effects (like fatigue, hair loss), but they shouldn't be as severe as the first time since I will be starting off with healthy blood cells. The doctor described it as spreading weed killer on a healthy lawn to kill a few weeds. With the first round of chemo, the entire lawn was weeds. This is the two month time period during which my white blood cell counts will be low and there will be risk of infection.

- ATRA - 15 days every 3 months for 2 years. This is the maintenance phase, or Phase Three. ATRA is the second, lesser chemo drug I was on while in the hospital, and is taken in pill form. The first few days on it, until my body was acclimated to it, I had crushing headaches. The doctor said they've found this to be common with young women. Some countries, like Italy, give more doses of ATRA and have it last only one year. My doctor does it over two years because every time you restart it, the headaches comes back. There are a lot fewer restarts in his pattern than fitting it into a year with a week on/week off pattern. Aside from the occasional headaches, the two years on this drug won't affect my daily life.

Throughout these treatments, there will be additional testing to see if I am in remission.

Although I won't be considered "cured" until five years, it's the next 5-6 months, and then to a much lesser extent the following two years that will take some effort. Still, if only this were as easy as dumping a bucket of water on the Wicked Witch of the West...

The next two and a half years of treatment may not be as fast as a quick sploosh and "I'm melting, I'm melting," but the important point is that with my type of Leukemia, the doctors know how to kill it. For a disease so rare, it's amazing that they have been able to create a treatment plan with such a high success rate. I thank God the doctors have found their equivalent of a bucket of water.

Three More Weeks Here... Maybe

Once again, I heard the phrase today from an oncologist that I am "turning the corner," which is excellent news!

Though I have to admit: it's an Inception-like corner. When I ask questions about the exact status of my conditions, the answers are filled with vagaries. I may be here three more weeks, maybe longer. The clot in my liver may be permanent, or it may be able to recanalize. The blood in my lungs may be gone for good, or it may return if my cough doesn't improve. The lesions on my tongue that make it difficult to eat will disappear when my white blood cell count pops in a week, or it may take several weeks for that cell count to return. The high fevers are likely gone for good. The platelete infusion I am receiving right now will likely be one of many more to come. (In a future blog entry, I will be giving details on how to donate blood, for anyone who'd like to help me pay the favor forward.)

There are lots of positives, and I need to remember that what's around a corner is usually what you expect to find there. I am kicking this disease. Ryan and my parents have been so great, as well as the doctors and nursing staff, and today I saw Katelyn for the first time in nine days.

She has a crush on a registered nurse here named Hoshi. Throughout her visit today, she would peer from the door of the Family Lounge and call his name. Next time Katelyn comes, we will have to bring her earlier while he is still on duty. With all she's been through, I can't deny her a chance to wave and say "Hi Hoshi!"

On a final note: some of my hair has started falling out, so thank you Jen and Mom for the beautiful hats. Maybe no more of it will fall out, and I will have a great fashion collection instead of a requisite collection!

My 14-month-old Role Model

My niece, Elise, is as happy and carefree as a baby can be. She loves Elmo and climbing on anything she shouldn't. She also doesn't give a damn that at 14 months, she is still bald, and thus has to dress in pink and wear head bows, so strangers don't comment on "what a cute little boy he is."

My hair has not started falling out yet, but Elise is already my role model.  She is gorgeous just the way she is. I cannot hope to look as cute as she, but at least I can try to have as care-free an attitude about it.

Losing one's hair seems to be a big deal when one has cancer. Maybe I will care more later, but right now it seems inconsequential compared to everything else I've been going through. So Elise, I love you dearly, and look forward to headbow shopping with you.