Tracie Cone has always been a trailblazer. This award-winning journalist is the former California Newspaper Executive of the Year. She shares a Pulitzer Prize with fellow staff members at the Miami Herald for coverage of the aftermath of Hurricane Andrew and has twice been nominated individually. She has focused her writing on helping the underdog and empowering those without a strong voice of their own. Now she takes us on the fight of her life.
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Archive for June, 2010

Chemo-patterned baldness

Today we shaved the falling fuzz, resting at the Bozo pattern

OK, so my hair really didn’t fall the way it looks in the picture. But today I started getting itchy, like you get after a haircut and little hairs fall down your back. I realized the fuzz left on my head after my buzz cut last week was starting to fall out. Fast.

So today Michelle shaved my head, dulling a couple of razors in the process. After one break in the action she told me I had the same hair pattern as Bozo the Clown, so we stopped to take this picture.

I am adjusting quickly to life without hair. In fact, after a couple of forays in public, I’ve ditched the scarf for the most part.

The scarf screams “chemo patient,” which evokes strong reactions in people – from pity to plain ol’ ignoring. Some people are sympathetic; others just can’t face reality or mortality. I sat at a small café-style table next to a woman this week who could not look to her right at me. All of her conversations were directed to the other two women at the table. I think the scarf scared her.

Without the scarf I’m just some crazy lady who shaved her hair off. An artist perhaps. Or a lunatic.

In any case, people smile and stare. I like that much better.

Goodbye Fat Pants

Me with my stack of banished 'fat pants'

In my continuing effort to look on the bright side (ugh), today I offer this: A stack of 9 pairs of “fat pants” I’m going to put in the Big Brothers/Big Sisters donation bin.

Even B.C. I was beginning to get the upper hand in my post-40 battle with weight. I lost 7 pounds, then the stress of the diagnosis came. Combined with the dietary changes I made to battle cancer (including no alcohol, sigh), the weight started dropping off. Add to that the chemo days when it’s hard to eat anything, and I’m up to 23 pounds!

The problem is doctors don’t want me to lose weight, but I’m really not sure how its not supposed to happen given the 5-6 days when absolutely nothing’s appealing. The nurse in charge of the trial I’m in even pointed to my belly and told me to try to keep it. Doctors could use it to rebuild my breast after the mastectomy, she said. (Carrying on the bright side theme, that means a breast lift and tummy tuck!)

Despite the warnings it’s hard not to be happy giving away this first batch of fat pants. I can even fit into 501s now, which haven’t suited my body type for a few years!

This is not the diet anyone wants to be on. But today, the second day I was able to walk 1½ miles, I made a new goal: to emerge from this healthier than ever, physically, emotionally and spiritually.

That includes permanently banishing the fat pants.

I’m running errands for the first time as a “scarf lady.” I’ll let you know how it goes. I never have known how to react to women I see out in the midst of chemo, other than I’ve wanted to hug them. But mom always said don’t stare.

Cancer and happiness

I felt good enough today to muster tea with friends I hadn’t seen in a while. The up side to having cancer is reconnecting with so many people who have dropped into and out of my life over the years.

In some cases they are friends separated by geography and dozens of chapters in my Book of Life: high school athlete in North Carolina, college misfit at UNC-Chapel Hill in the late 70s, writer at the Miami Herald of the 1980s and early 90s when South Beach was full of retirees and the newspaper kicked ass.

My friend Trish Robb lit this in Chicago

Sometimes the friendships simply ceased all healthy function. But in each case I loved every one of these people at the time they played starring roles in my life story. Cancer, the Roto-Rooter of the soul, teaches that love, once it exists in a moment in time, never goes away.

It’s a cliché that having cancer – or any life-threatening illness – changes people, but of course it does. How could it not? It scares you shitless. It causes you to regret all of the days you woke up and didn’t think ‘THIS day is the most beautiful and full of potential of them all.’

Lately I’d spent so much time pissed off about the circumstances of my recent past to see that my life has never been better. I focused on deception and deceit, giving short shrift to my wonderful present with its limitless future. Argh!!

So no wonder the universe hit me over the head with a 2×4. Now I see it, and that’s why I’m happy.

The Round 2 home stretch

OK, it’s Sunday and I’m emerging from the dark side of chemo hell, my first without hair. Friday and Saturday nights after my Tuesday infusions are always the hardest. Not only am I sick, but I feel so alone while everyone is sleeping. I’m not good yet at finding the angels who are supposed to be watching over me, yet I know they must be there or I would have not made it this far in life. But what if they abandoned their posts, allowing this cancer to form in the first place? Chemo is a mind f*&$.

I’m heartened that Round 2 didn’t seem as brutal as the last. At least I wasn’t curled in the fetal position trying to hold on for dear life. Oh, I still felt sick, but it was more like a really bad flu. No food appeals to me: I survived the weekend on club soda, apple slices and strawberries. Again poor Michelle with the Whole Foods runs. It’s hard to eat anyway when nothing’s coming out!

Why was this time better, I wonder, when it’s supposed to get worse? At first I thought it was the extra nausea meds Stanford gave me. Then I remembered all else I did in the week leading up: the detoxes and cleanses, the energy work, a cracker laced with medical marijuana (while I could stomach eating. But it really doesn’t help when I need it most; the thought of eating it is nauseating), and the nonstop prayers from all of you. I will keep throwing everything I can at this because there’s got to be a kinder way than just chemo alone.

When I’m up at night and my thoughts run wild, I look for purpose and wonder how my life will change when this fight for my life is over.

It seems silly to think that my outlook will ever be the same again. Things that once seemed important to me already are trivial now.

Seize the moment. Find what makes you happy. Later is for people who think they have forever.

Hanging in

A quick update from the throes of Round 2. And a shout-out to Katie, Dr. Carlson’s PA. Katie declared war on my nausea and ordered an IV dose of Zofran that is supposed to last 5 days, on top of taking the pills. No cakewalk, but I’m dealing with Chemo Hell better than last time. Made it through last night without getting sick. Hoping for the best today. Even shuffled 100 yards or so around our cul-de-sac this morning. Thanks for all of the support, Team!!! More when I can get upright again.

I am not my hair *

Michelle shaved my head Thursday, ahead of Sunday, when doctors said it would fall out.

Hang on! Here we go again

The ride begins. It’s weird sitting here knowing I’m being seized by the twin chemical demons Adriamycin and Cytoxan on a search-and-destroy mission in my veins. They’re killing fast-growing cells, and not just cancer. People who withstand two types of chemo at once are super human, in my book, with a strong will to live.

Cytoxan, which is clear, seems relatively benign hanging overhead in its plastic pouch. But Adriamycin is some kind of super, evil chemo. First, it’s red. Screaming bright red. It comes in giant syringes maybe 1½ inches wide and 5 inches long. There are two of them. Adriamycin is why I had to have a baseline echocardiogram.

The Stanford nurses wear what looks like hazmat suits over their uniforms when they handle it, and it takes two nurses to verify it’s the right drug. They ask me my name and date of birth for each tube. Then I have to read the tubes to make sure it’s correct. And then the stuff they can’t touch goes into my jugular. Freaky. This week it was nurse Rachel who gently pushed it by hand, watching for any kind of problem should Adriamycin leak outside of a vein. I patted the tubes and ordered the chemo to fight hard.

Cheering on the Adriamycin. Tomorrow no hair

I imagine the chemo molecules like little pac men gobbling fast-growing cells indiscriminately. Cancer, for sure, because late at night when I have the most in my system I can feel the tumors aching. But all of the other fast growers die too: my eyelashes are gone, hair, skin, nails, mouth, esophagus and the entire route to the end. I become super-sensitive to touch, smell and hearing. By Friday everything is swimming and I fall apart. That’s why I’m shaving my head Thursday before it falls out Sunday. I think my scalp will hurt less without hair poking into it.

I know I can do this because I know what my reward is. Already my health team says my tumors are changing, pulling free of the flesh and exhibiting mobility. That means smaller.

With all of this love from all of you who are reading this, the support from Michelle, the changes I’ve made to support my body through this, and the BEST team of breast cancer health professionals in the US, I cannot fail.

So I need your support to keep my attitude positive, especially in the throes of the nightmare this weekend. So when I’m awake at 3 a.m. feeling like I can’t make myself go through Round 3, remind me of Tuesday, they day I learned my tumors shrunk.

Round 2; A little good news and I’ll take it!

I’m lying in bed at Palo Alto’s Westin Hotel the morning after Round 2, which was difficult and emotional, and forced me to bed at 5 p.m. Despite all my positive thoughts going into it, my reality as we left Fresno was the dread of another week of chemo hell. The angst of the 3-hour drive lifted when we arrived at the Stanford Cancer Center. Time to get to work.

First order: check my white blood counts to see if I can receive chemo this week. I have a powerport surgically installed under my skin on my breastbone with a tube that leads through my jugular vein into the top lobe of my heart. They can stick a needle in it to both draw blood and drip in the chemo, but the drawing of the blood part wasn’t working. It took 3 hours of prodding, flushing and administering blood thinning drugs to get to work, during which time I was hyperventilating, my skin crawling over thoughts of this device in my body. The lack of a blood draw meant I had to visit my doctor without blood test results so she wouldn’t know for sure whether Round 2 would proceed.

My doctor, Robert Carlson, is at an oncology convention in Chicago, so I met with his capable assistant Katie (love her!). We talked about all of the problems last week with nausea and constipation and things I might be able to do on my own to ease them. She made a good point well taken that while some studies have shown that smoking marijuana eases nausea, the possibility of a lung fungal infection for someone like me with a compromised immune system would be horrendous. Nobody wants that.

Then on to the good news. She poked and proded my right breast, spend a good deal of time zeroed in on the two tumors while moving them around under my skin. She then pronounced “a change” in them. “A change as in better, smaller?” A change, she repeated. Not bigger. But before they were attached to the surrounding tissue and the fact they can move means they aren’t as big. And that means they are shrinking, which I thought I could felt one night in the throes of chemo hell when they were aching like crazy. I burst out crying happy tears.

We went ahead with Round 2 after the blood came back with my white cells strong, thanks to the $26,000 Neulasta shot I get the day after chemo (It’s why I’m still at Palo Alto the next day). I was in the capable hands of nurse Rhonda, though it’s very disconcerting to have something injected into my heart by someone wearing a hazmat suit!
During the process I got a visit from Murial, my nurse from last week, who stopped by for a fist bump after she heard the good news about the shrinkage.

This week I will continue to become weaker, and this is the week my hair falls out, so I’m going to beat it to the punch by shaving it on Thursday, my last upright day for a while as chemo digs in to work its evil magic. Check back for that video.

Despite all of the physical discomfort I must endure and all of the positive life changes I’ve made to turn my body into an inhospitable host, I am heartened that my full-time hard work is producing results.

I consider all of you, my friends, a part of my healing team. There is no way alone I could maintain this positive “kick cancer’s ass” attitude in the face of so many frightening things that are happening to me!!! The cards, mails, letters, text messages, FB shout-outs, phone calls always seem to come at the right time. You boost my confidence and make feel I can do anything. And for that I am eternally grateful.

So let’s celebrate our team victory today: cancer is running scared from us after just one treatment!!!! And this insidious disease is just beginning to realize the power of our collective assault on it. I can’t wait for next week.

So get your mojo running. The chemo is in. Time to get to work sending your cancer-killing vibes my way.

Tuesday morning: The mind seemed willing, but apparently the psyche is not. Up all night dreading the start of a new cycle, yet eager to kill the demons within. Off to Stanford we go. I’ll post more from the infusion lab, or at least that’s the plan.

3 p.m.: Still no chemo. Some problems with my power-port, the device surgically placed under the skin on my chest to receive the chemo and deliver it to my heart. There was some sort of a blood clot in it — not the kind that can harm me, just the kind that makes it impossible for them to draw blood. No blood draw, no chemo. They have to be able to test my white cell counts to know whether we can proceed. Blood is now drawn and we are awaiting the results!

BUT ON THE BRIGHT SIDE: Today doctors detected a change in my tumors. They move around, which is evidence they are SHRINKING.

So thanks for the prayers and positive energy. It’s working!!!!!

The Virtual Wedding Guest

Mom, Kelli, Paige and Terri crowd into say 'hi'

Paige rocks the pink bracelet, and Jared shows his wedding ring.

Missing my niece Paige’s marriage to her honey Jared and instead watching it by Skype yesterday could easily have turned into one big “me” pity party. Instead LOVE and a complete lack of expectation turned it into one of my life’s great experiences.

Just sitting here trying to write about it overwhelms me. The nutshell: from the wedding trumpet call at 3 p.m. California time until 8:30 p.m., when we sadly ended the connection as the NC reception ran down, I savored every moment and was bombarded with love and well-wishes.

First a shout-out to Ronna Pinkerton, whom I’d never met before our virtual experience yesterday. She works for Microsoft, commuting from Charlotte to Seattle, so my sister asked her to Skype the wedding to us instead of enjoying it herself as a guest. Because of Ronna I was able to see Jon escort my mother, looking beautiful in her long lavender dress, Terri, my sister, maintaining uncharacteristic stoicism, and many friends in the church.

With trumpet fanfare Paige and my bro-in-law, Wally, walked in arm and arm as the guests stood to watch. I’m sure sweet Wally was crying right along with me.

Then this: As the wedding drew to close Wally, my niece Kelli (the maid of honor), Jen and some of the other bridesmaids waved up to the camera mounted at the edge of the balcony as they exited the church (More tears at the surprise of my own personal shout-out). Ronna then generously asked if I needed anything else.

Would it be too much trouble, I asked, to see a little of the reception? I had no idea what would be in store from this impromptu request.

At the country club Ronna set up Skype somewhere between the bar and the dance floor. It was hard to hear, so we also had an IM chat box going in case anyone wanted to stop and say ‘hi’ (tho I was prepared just watch).

I figured the novelty would wear off for everyone in about 20 minutes. I figured wrong.

For the next three-and-a-half hours I was bombarded with love and well-wishes from my family, old friends from high school, young people I’ve seen grow up with my nieces, two of my old teachers, and even people I’d never met, especially the cancer survivors in the group. As soon as an old friend left, another would jump in to carry on, even if it was just a quick “I love you. Kick cancer’s ass!!”

The basket of 250 pink rubber bracelets that Paige had ordered from the Susan G. Komen foundation quickly ran out. So many people, guys included, would snap them at the camera as they passed in my view. Even Paige was rocking one with her wedding gown!

As the band churned out oldies, Terry G, Rhonda M, Mike P, my cousin Julie, Lynn HH, Beth, and a dozen or so people I couldn’t make out stopped by to virtually “dance,” allowing me to be caught up in the JOY of the occasion.

Ronna, my new BFF, left her post for only one dance. Occasionally I would insist she shut down the computer and have fun, only to have her IM back: “Making this possible for you means something to me.” Ack. Tears again just writing it.

We had our moments of bittersweet sorrow. Sweet and sensitive Kelli broke down and we shared a good cry over the circumstances of my absence. No matter how you spin it, I wasn’t there to share in this joyous family milestone.

The timing of my diagnosis sucked, but as I said in an earlier post: My goal was to get my overdue physical BEFORE taking off for a week in NC. So in a way, the wedding caught this fast-growing disease before it spread further.

Yes, life’s curveball thrown my way means I missed Paige and Jared’s wedding, but I plan to be there years from now when their children are born. And the grandchildren, too.

The upside: As the missing piece to a perfect puzzle, I experienced how much my many dear NC friends love me, and the intensity of the healing vibes they constantly send my way.

In closing I’ll end on a lighter note. One would have thought that everyone had gotten “the memo” on me by now, especially my sister’s close friends. But when G.P., known for her capacity to consume unlimited vodka and say ridiculous things, stopped by to see me she took one look, then sent this IM note:

“What the hell did you do to your hair?? It is really butch!!”

Duly noted, and gone by Thursday.

Michelle and Tracie dressed up to watch the wedding

Terry Gibson and Ronna Pinkerton dance with me

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Copyright 2010 by Tracie Cone. All rights reserved.