Sometimes Cancer Has Me Feeling (and Maybe Looking) Like Gollum


As you can see, I didn't let my sons shave my head. I changed my mind. I'm too curious--I want to see if my hair will really all fall out on its own. But I did let 13-year-old Mr. O chop it to chin length. If the few strands I'm hanging onto manage to last through Halloween, I have a built in costume. Don't we make an adorable duo? 

My dear sister girlfriend Amanda Enayati (you should follow her on Twitter and read EVERYTHING she writes--especially read how she once tracked down a thief) disagrees about this Gollum thing. I sent her this picture and she very sweetly sent me back a few snaps of totally fly laydeez who are bald or have super duper short buzz cuts. Point taken. 

But other than what we have in common hair-wise, real talk: sometimes this triple negative breast cancer treatment makes me feel rather Gollum-ish. Perhaps you'll understand if I explain how a round of chemotherapy goes:

Chemo Eve: Trust me, it's way less fun than Christmas Eve, unless you made the grave mistake of not doing any of your shopping and descending on the Glendale Galleria at 4 PM on Dec. 24.

I can't concentrate. I'm anxious. I have insomnia. I'm angry and moody because I have to take steroids to counteract the effects of the chemo. 

This time around my doctor prescribed me anti-anxiety medication but I'm scared to take it because I immediately came home and read up on the side effects. Anything that says "suicidal thoughts" could be a side effect freaks me out. Also, I don't know if I want to take anything that's going to turn me into the drugged up older sister from Sixteen Candles.
 
Chemo Day: Better known as the day I give Charon (the chemo nurse) my fare to cross the River Styx. Except the river is an IV that's going to drip SIX HOURS worth of drugs into me. 

I get my blood tested first so the doctor can see if I'm healthy enough to get another round of chemotherapy. If I am, I get anti-nausea drugs, liquid Benadryl, and more steroids administered through an IV first. Then I get the chemo drugs: Carboplatin and Taxotare

It takes awhile to drip all the stuff in me in part because I haven't had much luck with IVs. My veins aren't super obvious. When I get a needle that is too big inserted it's extremely painful--which means switching to a smaller needle...which means getting stuck again. The chemo drugs sometimes burn quite painfully going in, which is a sign that the IV drip is too fast. Then I have to get the nurse to slow down the amount of liquid going in. 

Yes, there is crying on my part. I think I freaked out one of the nurses during round two cos I was so upset. Unfortunately, during that round, one of the chemo nurses did something while inserting the IV which ultimately caused my vein to harden and my arm to bruise and swell. That could mean blood clots. Joy to the world. So I'm a little more nervous than usual about round three. 

What do I do for six hours, you ask? I stare at the IV bag and contemplate the meaning of life. The slow drip-drip-drip generates profound reflections. 
No, just kidding. Last time I worked quite a bit--writing and editing via iPhone. I text my sister. I talk to my husband. I sleep (Benadryl makes me VERY sleepy.) I read my Twitter stream. I have had a hard time reading books because I can't hold a book with one hand (I'm a hardcore print book person) but this time I'm taking a Kindle so we'll see if that works. Oh, and I get horrified looks from all the other chemo patients--99 percent of the other people are 55+ years old. 

During my last treatment a really old guy came over and told me how sorry he felt for me. "You are too young to be in here," he said. And then he prayed over me. I kinda wanted him to go away because I was having a hard time keeping my eyes open, but he was sweet. I never say no to prayers unless the person is praying for me to revoke my own faith and be freed from the clutches of satan (it's happened before.) 

The previous two rounds of chemo I wore a Depeche Mode shirt. I'll be doing that again today--to remind me of all these good times, especially ones I was having last fall at this time of year when the world's best band was on tour:
I need as many reminders as possible that I am human, not truly Gollum, and that I am actually alive. 

The Day After Chemo: I feel weird. I take steroids and anti-nausea medication. Everything feels a little hazy. I feel a little mentally numb and physically slower. In the afternoon I go get a shot of this stuff called Neulasta. Chemotherapy brings your white blood cell counts WAY down so Neulasta "is used to stimulate the growth of 'healthy' white blood cells in the bone marrow, once chemotherapy is given." That stimulation does not feel nice, but it's better than getting sick from common bacteria.

Three Days After: I start having a really hard time walking and moving.
I'm not even THAT fast.
As for food, it tastes like a cross between metal and ass. I have no appetite whatsoever. My mouth is drier than a bale of roasted cotton. It's often a struggle to stay awake. Severe nausea and vomiting become a factor. 

Hades: On day four, it's a wrap. I've arrived in hell. 
I can't walk unassisted. Throw in everything else from day three and add extreme sensitivity to sound. I also find myself feeling completely numb and emotionally tapped out. At times it's hard for me to react to what's going on around me. I find out someone died and I'm like "Okay. That's terrible, but I can't think about that right now."

At other times, I'm super emotional. I get upset very easily. I call my sister on FaceTime and cry. Sometimes I become Gollum, crawling on the floor to try to get around. It might take me 10 minutes to crawl 30 feet. When it all gets really bad--which tends to be at night--I start thinking I'm about to die. I say prayers and just close my eyes. I figure if I wake up and I'm dead, at least I won't feel the pain. Also because chemo drugs throw women into menopause (no, I don't know if it's permanent or not) I have hot flashes--they tend to wake me up and because I'm so hot, I wonder if I'm in hell.

I don't like my boys seeing me like that. And so it's been really wonderful that my dear friends Julee, Blanca, and my best homegirl Maisha have picked them up and taken them to spend the night during the weekend after chemo--which is when it really gets bad. It's beyond generous cos at 10 and 13-years-old, those boys are LOUD.
That's pretty much my life until about the seventh or eighth day after chemo. I gradually start to feel better and then finally, about two weeks afterwards, I feel more human. Except this time I got neuropathy--which is numbness in your extremities. My right pinky finger was so numb last week I could prick it with a needle and not feel anything.

And then I start to look more alive.
The wig makes me feel less Gollum-like. My friend Kimberly took me to get it and I'm so grateful she's an AWESOME stylist (and is gorgeous and an amazing mommy) and knew where to take me to hook a sista up. It's kinda similar to my hair--but my hair is WAY more fabulous. I miss my hair quite a bit, thank you very much.

Last week a woman told me that my hair looks SO MUCH BETTER than it used to. Then that person asked what I had done to it--cut, color? What is it? I kinda wanted to rip the wig off and throw it in her face. I didn't. I just laughed and said "you're so funnnnnyyyy" and changed the subject.

Last week I also got asked why I hadn't lost more weight cos, you know, cancer patients are supposed to lose TONS of weight and get super skinny. 

Seriously, folks. Cancer is not the illness equivalent of Jenny Craig or Weight Watchers. In the week after I have the chemo infusion I lose about 10-15 pounds. Yes, in a week.

I can't eat much--3 tablespoons of food is enough-since I have gastrointestinal problems. During round two I became a pro at vomiting on myself. But I try to eat a bit at a time and then as the days pass and I start to feel better, I make myself eat more. For a few days there, everything taste horrible--I only eat rice, lentils, apple sauce, a bit of scrambled egg, and saltine crackers. And then after a couple weeks, I still am not that hungry and things don't have much flavor to me, but I make myself eat more. Fortunately, I gain back a few pounds.

My sweet friend Gayatri who I have known for nearly half my life (and I wish she lived here in LA, not in Atlanta) sent me this hilarious bingo card.

It made me laugh so hard because I have had EVERY one of these things said to me over the past two months. I don't mind some of them because I know folks don't always know what to say. And sometimes they're genuinely concerned.

The "you don't look sick" one cracks me up. One, BB Cream and some good cosmetics helps with the pallor and greyish cast your skin gets. Two, CLEARLY the reason I am out in public talking to you is cos I am no longer feeling like I'm going to die.

But all those comments are bearable because the cancerous lump in my boob feels like it's getting smaller. If it dies, this will be all worth it. Even the horrors of IV needles. C'mon, cancer, DIE!

What else makes it bearable? You--all the kind wishes sent on Twitter and Facebook. All the emails and text messages and cards from so many people.

There are my coworkers, both current and ex, who have done OUT OF THE BOX things like snag me a Depeche Mode poster signed by all three members, Dave Gahan, Martin Gore, and Andrew Fletcher. I was like this:
No joke, I got so overwhelmed I had to go straight to bed. Oh and then last week my colleagues surprised me with massive gift basket with an amazing crystal necklace and ponchos and tea and gift cards--and sweet messages written inside a card. Seriously, it was out of control.

There are my friends who live around the world who I have known most of my life, who are more like sisters and brothers than anything. Like Gayatri in Atlanta, who sends me sweet notes and messages nearly every day. And her presents--she even has her friends sending me presents! There is Daphne in Chicago who set up a fundraising page for me--gosh, I am so grateful to everyone who has donated, especially when I get those bills from UCLA arrive in my mailbox. WHEW. Leslyn in Raleigh calls me to just to see how I'm doing and sends me presents and has her whole church praying for me. 

Then there is Leili in Boston who tells me encouraging, hilarious stories about her adventures right when I am feeling a bit emotionally down and need to laugh most. Syda (who is a cancer survivor!) and Kelsey in Chicago generously send me books and DVDs and FaceTime with me when I'm in need of advice. Kye in Chicago sends journals and treats and soap (and she's coming to visit this weekend.) Yogita and Shanti have started fundraisers for me. Dena in Chicago and Sina in Peru who bring the prayers and perspective...how did I get so lucky to have these people in my life all these years?

And then there are my dear friends here in Los Angeles--Agi, Amanda, Blanca and Rashan, Cameron and Jade, Cymbeline, Cynthia and Matt, Dennis, Elisa, Julee and Kenny, Kimberly and Paul, Krista and Nick, Layli and Baktash, Manasa, Maisha, Marsha and Kira and Kiyomi, Matthew and Darcie, Mona, Nura, Renee and Simon, Shaya, and dear Suzy.

They drive me to and from work because all the meds make me seriously crashtastic. They come visit me just to talk, which is so so nice. They come over to babysit me when I'm really feeling terrible. They pray for me and with me, they bring me flowers, cook my family dinner, bring me treats, make me soup, make lentil stew, CLEAN MY HOUSE, entertain my kids, bring fruits and vegetables for juicing, take those boys to tutoring and music lessons, and even take me to Santa Barbara on the weekend before chemo when I'm feeling like hot stuff.

And of course, my sister checks on me every day--she has FaceTimed with me for hours just to make sure I'm okay and not actually dying. My dad will teach until 9 PM and then come home to call Mr. O and go over his math assignment for an hour. My mom who keeps praying for me. My aunts and cousins send me text messages and call to check on me.

It's all made me realize that overall, I'm absolutely terrible at taking care of myself and prioritizing my health and life.

As for that...one day at a time. One day at a time. In the meantime, wish me luck and send me good wishes on round three today. I need it.

Comments

You are such an amazing human being - a real hero! My heart is with you!
Tafari said…
Thanks for sharing this element of your life. I appreciate that you live out loud. I think I wig snatch off & toss into that woman's face would have been classic!
SAMIMI-EXTREMIE said…
i love you liz! praying for you!!
Mallika Chopra said…
Love your courage to share your truths and experiences! Sending lots prayers your way!
Anonymous said…
Sending prayers to you from Virginia! Stay strong sister!
This is incredible. Thank you, Liz, for sharing yourself with us—even and especially your darkest moments. Sending you love and light and lots of good ju ju. ((HUGS))
joseph shonga said…
Prayers your way Madam! I know just too well what you are going through. Remain positive and God bless.
Yemi said…
Hi Liz! I'm a long-time occasional reader who hasn't visited your blog in ages. I thought I'd check in today, hoping to catch up on your blog and I'm deeply saddened to hear that you are going through this. I am sorry to learn that your strength and health are being tested in this way but I am truly thankful to hear that in addition to your family, you have the love and support of great friends and co-workers during this time. Sending you lots of love, positivity and prayers from NYC!
Lisa Blah Blah said…
Liz - OMG whaaaaat? I fell off the Internets for a while and I didn't see this until recently and then I was so stunned I didn't know what to say. But I kept thinking of you in these random moments and praying you will be okay. This truly sucks, and there's no getting around that. I am glad you have so many amazing people around you to help you get through this. And I do love that you are continuing to write with great humor and honesty and your usual amazingness. I add my prayers to everyone else's and I wish you strength and grace, and I send you love. xoxoxo
Shok said…
You Are AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! <3
Chookooloonks said…
I keep coming in to check on you. You're as fabulous as ever.

Keep on keeping on, friend.

K.
LisaPetrides said…
Liz, just catching up on your news now. Please know that we (the team at ISKME) are sending you our very best anti-nausea and healing thoughts down the coast to you. Ditto to the comment above--you are indeed Awesome.

Popular Posts