Tracie Fights Back

I'm losing my hero.

Dear Elizabeth Edwards:

We don’t know each other but I have felt a kindred connection to you even before my breast cancer diagnosis.

You live in Chapel Hill, N.C., and I spent four wonderful years there. We both were betrayed by cheating cads when we most needed support from someone to whom we had given so much of ourselves.

Then when I was diagnosed with breast cancer (on the day Lynn Redgrave died from it, no less), you were my inspiration. Someone who it seemed had managed to contain it with the best care your money could buy.

After all you went through, I thought you were invincible. I guess maybe I hoped you were because that offered hope to the rest of us, too.

The news yesterday that doctors said you no longer would benefit from further treatment settled over me like a dark cloud. I’m sorry for you and I’m sorry for those of us who want everyone, especially you public figures who become a part of our societal reality, to beat this disease.

When rich and famous people succumb, I sometimes wonder what chance the rest of us have.

I think my breast cancer was caught earlier than yours, though I have googled unable to find an answer to that worry.

Most people only care that you have breast cancer. For those of us fighting it, we want to know what kind — is it hormonal receptive, is it HER2 positive, in what stage was it caught?

In other words, are we in the same boat as you?

I know deep down that not everyone dies from this disease when one considers the many forms in which it comes. In fact, most people don’t. However today I just don’t feel it.

I’m sorry it’s you, who has given hope to so many of us.

Life doesn’t always work out the way we want it to. Though, like you, I’ve found that the new path can lead to even more exciting places.

I find some solace that you are leaving this Earth beloved by so many.

But mostly I’m sad and angry. Sad that breast cancer will claim you. And angry that cancer continues to kill while our country pours its’ resources into fighting the wrong enemies.

Your admirer,
Tracie

I’m about halfway through with radiation, and while this should be cause to celebrate, I’m really worrying about how my skin will hold out.

I’m suffering with a horrible burn rash across the half of the radiation area closest to my breastbone, and all of it looks sunburned. To top it off, the fifth and final dose they give me – a long, shallow dose across my breastbone – has started to create a smell as if something’s burning.

I think it’s me.

Radiation is still a strange experience, made better by the really nice folks at Fresno Cancer Center. One wonders what might be the long-term effect of something for which everyone else leaves the room and shuts a big metal door for good measure. I had some trouble breathing deeply over the weekend, and there is now some concern that my lungs might have been – what’s the word, not “burned,” but that’s what it feels like. I don’t know what the word is for radiation exposure. But the right lung might have gotten too much exposure, so Dr. P altered some things today in an effort to help both my burns and my lung, just in case there is a problem. We shall see.

Radiation is making me tired, according to schedule. Not sleepy tired, but melt-in-your-chair tired. Yesterday I was sitting in a chair next to my glass of water. I was thirsty, but didn’t feel like lifting my arm to reach the glass. That kind of tired.

But it’s better than chemo sick. And it’s better than the pain of having both breasts lopped off. It’s just weird to feel well and mentally alert for the first time since May – but yet it’s so danged difficult to get my leaden arms and legs to move.

I’m not complaining – just stating the facts. I’m happy that after enduring so much for so long, the end is within my grasp. (If I could only reach out my arm)

It will take a while for me to recover my strength from radiation. But now I have a date – Feb. 1, 2011. That’s the date Dr. P wrote on my disability form today as the time I will probably be able to return to work at the Associated Press.

It will have been exactly nine months from the time of my diagnosis to my return to work.

Exactly the length of time it takes to create a new life. My new life.

A fine, temporary layer of baby hair is starting to grow! I'll take it.

Let there be hair, but only in the places I want it!

The signs that chemo is dissipating in my body are upon us, and it was first revealed in the peach fuzz of fine baby hair now sprouting over my head.

This photo I managed with my computer is the first I’ve seen of it, though I have been rubbing it for a week. It’s dark! Yay. But that doesn’t mean the real stuff will be when it displaces this temporary coiffure in early spring.

(They say my new hair will be coarse and curly and could come in a different color. I’m thinking that color might include a lot of gray.)

Head on the hair means hair is also starting to reappear in other places, unfortunately. The only up side to all I’ve endured was the surprising arrival of a chemo-induced Brazilian (no offense Julianna, my Rio friend), now showing signs of subsiding. Not having to shave my legs for the past seven months has been a nice departure, not that I would have been able to manage anyway.

But most of the hair is on my head, where this fine layer still isn’t near enough to keep me warm.

But having baby hair is a sign that my rebirth is upon us. The new and improved me is emerging after a laborious ordeal.

I can’t wait to see where this life leads me.

I see you staring from across the room with that look of profound pity. You look away quickly when I feel your gaze.

And you. I know you had no intention of shopping for hats until you saw me quickly slip off my scarf, plop one on and check myself in the mirror. I already had seen both of you across REI looking in my direction and whispering. Suddenly you were next to me.

Yes, I’m a woman and I’m bald under my scarf and breastless under my sweater. I had cancer (I refer to cancer in the past-tense even though I have lots of treatment to go).

If you only had been brave enough to say something instead of staring and whispering I could spare you suffering the emotion of pity. I might even inspire you.

While many things about cancer and its treatment suck, the looks on your faces are the worst. I know that the way I look right now make me the poster person for cancer, but your stares serve only make fleeting my moments of feeling normalcy.

I much prefer you try empathy. All you have to do is ask.

Today I had a beautiful encounter while I was out to lunch with Michelle and Carol. We had hardly been seated when a kind man approached our table and leaned into me.

“Do you have cancer?” he asked as he took my hand.

As I’ve said before “it takes one to know one.”

As it turns out, Andy is famous in Fresno and beyond, and not just because he’s one of the city’s top commercial real estate associates. He turned his brain cancer into a cause – talking publicly against the cell phones he believed caused his cancer in the days when realtors lived with them practically growing from their heads.

He sat down with us and we shared stories about treatments and clinical trials, prognosis, alternative therapies and the power of positive attitudes.

Andy’s cancer is Stage IV, which means I need all of you who are doing such an effective job praying for me to add Andy to your list. He has been in several clinical trials and has kept it at bay for three years and counting!

I believe in miracles because they happen to me every day, and meeting someone like Andy, an inspiration for perseverance, is one in a long list.

So to you who would simply stare take heart: I have taken charge of my disease and my life is far more meaningful than it was before cancer because I make every moment count. In fact, my life has never been richer.

So admire my resolve, respect my resilience or even rejoice that it’s not you. But do not pity me. That’s an emotion best reserved for people who do not know how to be grateful for what the universe throws their way.

I ran into Dr. Nice at Stanford yesterday and he put the recent good news about my pathology report into an amazingly encouraging perspective.

First, it was great to see him. And even better when I introduced him to my friend Leslie as “Dr. Nice,” which is my nickname when I write about him. “I know you from Tracie’s blog,” she said. It’s funny to see his face turn red.

With the amazing Dr. Carlson back from sabbatical I don’t get to see Dr. Mollick anymore, but he of kind manner was just who I needed when the going got tough during my summer of discontent. Anyway, he was excited, as only Dr. Nice be, about my pathology report.

“You had a complete response to the treatment,” he beamed. It means that after testing my breast doctors knew the cancer was dead. That I already knew, but I didn’t know what it meant for my long term, and that’s what Dr. Nice took time to explain as we stood outside the infusion center, my ultimate destination.

With a complete response, doctors can extrapolate out and assume that because the tumor of origin died, the chemo likely also tracked down and killed all of the stray cells that my evil right breast might have sent to other parts of my body. Not everyone is so lucky. Some people even have tumors grow on chemo. So that’s thankful news No. 2, but it gets better.

Because I had a complete response, or PCR as he called it, I go into a different subset of people with my type of aggressive HER2 Positive cancer – those with the best odds of surviving it for good. That I had no idea!

Pair this with the Herceptin I received yesterday and will get every 3 weeks for the next year, my ongoing radiation, and the hormone-suppressing pills I will take for 5 years and my odds keep on improving. Herceptin, a biological agent, binds with cancer cells and alters the immune system to kill them.

I was so happy to run into him — and not just because he helped put my prognosis into a happy perspective for which I am deeply Thankful. The reason I was happy to see him is because I get emotionally attached to everyone on my medical team working so hard so that that I can live. I’ve missed seeing him.

What Dr. Nice told me only confirmed what I have felt in my heart and in my gut. I really believe that all of my cancer cells are dead. It means, however, that when I’m in radiation, I’ve started to worry.

I wonder if it’s overkill? Why am I blistering my skin and absorbing radiation, a cancer killer and causer, if my cancer is gone?

Well the same day I saw Dr. Nice I met Carol G., a thyroid cancer survivor who lives in Fresno. I told her about my concern and this is what she had to say.

“Think of cancer as an unwanted guest who brought negativity into your house. Think of the radiation as lighting sage to drive out the bad spirits.”

I like that thought. Radiation chasing out the evil spirits.

It’s what I visualized today as I lay on the table being bombarded with beams. It made me happy.

Radiation is the weirdest and, so far, easiest of the big three of cancer treatments. I don’t get sick like I did with chemo. And it doesn’t hurt, like the double mastectomy did.

But unlike the others, I worry about the longterm impacts of radiation exposure – and I’m starting to feel the effects of the beams.

I go five days a week and have completed the first of what I expect will be six weeks. They say I will eventually feel as if I am suffering extreme sunburn, and that I will be really, really tired.

I already feel slightly sunburned and pretty tired. It came on suddenly. I was trying to walk every day to build my strength and suddenly this weekend – bam! My legs feel like lead. In fact, when I walk I feel like I am wearing one of those heavy aprons one wears to avoid radiation exposure while getting dental Xrays.

I go to Fresno Cancer Center every weekday morning. Several of us are on the same schedule, so it’s nice to see familiar faces in the office every day.

It takes about 30 minutes for me to get through the process – far longer than the others, who seem to zip in and out. But I get five exposures, and each must be carefully calibrated to make sure it’s in exactly the right spot. The zaps go to the front and back of my right clavicle, in each direction along my right breast scar and in the middle of my breast bone.

As I showed you before, my chest is marked with a felt-tipped pen. I also received my first tattoos last week – small but permanent ink dots that are used to line up the lasers that point the radiation machine to the right place.

The technicians are very careful and the work is tedious. Their goal is to hit the places any cancer cells could be lurking that survived the chemo –without hitting lung tissue. Once a week they take new Xrays to make sure my body hasn’t changed – either from the radiation or from weight loss or gain. It’s a very precise process that involves geometry (which I thought was good only for shooting pool) and trigonometry (whose practical applications have escaped me from 10th grade until now).

Michelle went with me this morning and was able to come into the room as they lined me up. They explained the process, then they all hustled out to watch on the monitors as the big radiation-proof metal door eased shut, locking me alone inside.

Michelle came away feeling that this new chapter is “overwhelming. There is so much involved. And for you, laying there, it has to be even more.”

Only five more weeks to go!

The red laser lights are to help line up the machine.

This is what it looks like viewing from the monitor safely outside the radiation room.

My new boobs are here.

How’s that for an opening line?

They came in two blue boxes all wrapped up in a pink bag. I’m not quite sure yet if there is a right one and a left one – or if fake breasts are ambidextrous.

I want to say they look almost lifelike, but that sounds like something someone would say who also opines that people lying in coffins “have never looked better.”

My replacement breasts are smaller than my originals, and I wanted it that way. I had Cs and these are A-Bs. I wanted just a hint o’ boobs, not something weighty and cumbersome.

They are soft and squishy, and I’ll wear them tucked into a camisole – if I wear them at all. I had the option at the breast cancer lingerie store of getting an under wire bra. Can you imagine wearing one of those things if you don’t have to???!!!

I’m guessing that for now the prosthesis will be like my wig, which I’ve worn exactly twice. There will be times I want to go out incognito and take a vacation from my ordeal, and times I just want my clothes to fit better.

But most of the time I want to be comfortable. Wigs and falsies are not.

Besides, I’ve kind of gotten used to looking down at my flat chest, especially now that the pain has subsided. I still don’t have the full range of motion of my arms, but I’m working on it and getting better every day.

I’ve talked to a plastic surgeon about reconstructive surgery but haven’t decided I’ll go that route. After all I’ve been through, the prospect of a nine-hour surgery and six weeks of recovery don’t sound appealing. I want to get through radiation by the New Year’s and have all of this behind me. I miss work.

Except for the occasional person who calls me “sir,” probably because of my bald head and 6-foot stature, I’ve found that people don’t really notice my missing breasts anyway — unless I point it out.

That’s because the people I meet look me in the eyes, which are starting to sparkle again.

My new fake boobs fresh from the box.

What are the chances there would be only two people today at Fresno Yosemite International Airport watching loved ones endure TSA screening? And both were our white-haired mothers who had asked for airport wheelchair transportation.

What are the chances that both of us would be battling cancer? Both breast cancer? And both the rare and aggressive form, HER2 positive?

As regular readers of this blog know, I long ago stopped believing in coincidences and have started to see each encounter I have as part of the grand plan for me.

I met Marsha as my mom went through the TSA metal detector. I told Marsha that I had warned mom to avoid the radiation body scanner and opt for the pat down.

“Does she have cancer, too?” were her first words to me.

Takes one to know one. But it launched a conversation that lasted to the parking lot and my exit to make my radiation appointment.

Marsha, unfortunately, wasn’t diagnosed until her breast cancer had reached Stage IV, which she told me meant un-curable. But not unmanageable.

Marsha has been on Herceptin for four years. It has stopped the progression of her disease at her liver. I’ve seen that referred to as “progression remission.” It doesn’t get better, but it doesn’t get worse. People live for years like this.

I’ve just started Herceptin, which I’ll be on for a year. It’s the key to my healthy future and, dare I say? My cure. Meeting Marsha and hearing about her success was no coincidence. Those kinds of encounters keep reinforcing in my psyche that I am beating this disease. That everything my doctors are doing for me works.

By the way, this is how I answered Marsha’s question.

“No, she used to. And so did I.”

Will I ever show you my scars? I doubt it. But here are the radiation target marks with my camera covering my breast.

“The beam becomes my dream” and my dream is the return of my healthy body.

The lyrics to the old Blondie song ran through my head yesterday as I lay on some sort of huge radiation machine while techs determined exactly where to position me when the actual process begins at 8:30 a.m. Monday.

I decided on a smart and patient radiation oncologist in Fresno. He did his residency at Stanford, knows and wants to work with my oncologist, Dr. Carlson, specializes in breast cancer and he’s also a physicist. A very smart man. I feel good about my choice and being able to stay at home instead of living in Palo Alto for six weeks to get radiated at Stanford.

Yesterday technicians marked my chest heavily with a black Sharpie as part of the “getting ready” process. Today I look like those drawings showing how to quarter a cow.

It was a sobering experience in a long list of them. They took X-rays to determine exactly where the radiation will be directed. I had to lay on the table naked from the waist up for about 45 minutes, careful not to move even a millimeter inside the mold of my body they made to keep me in place. The entire time I could see my butchered reflection in the glass plate that covered the machine hovering above me.

The actual reflection prompted a mental reflection on my predicament. Despite all of the love and support, I am alone in the actuality of what happens to me. Alone in the chemo chair, alone on the surgeon’s table, alone and scared in the radiation room. It’s hard to cry and hold perfectly still at the same time, but I managed.

Someone wiped my tears. I was grateful for and comforted by that act of human kindness.

My radiation oncologist calls me an “intermediate to high risk” patient as he talks about the aggressive plan of attack on the place where my breast was and the neighboring lymph nodes. Radiation will be directed along my right breast scar and to the right clavicle. Because my chest is wide, I’ll get an additional dose along my breastbone. That allows the scar beam to be directed shallower to avoid scarring lung tissue. Brilliant!

My doctor’s “risk” description refers to the chance of recurrence. It pains me to hear what I already know. BUT I had the world’s best breast cancer oncologist directing my treatment, had exceptional reaction to my chemo and trial drug, I had a fantastic surgeon remove my cancerous areas, I will get Herceptin for a year and a hormone-suppressing pill for 5 years, I made lifestyle changes to detox my body and make me healthier and stronger, and now radiation will target the neighboring areas where cancer cells might be lurking. Each reduces my risk considerably.

This I believe.

At the end of my session a compassionate technician walked me back to the dressing room. She told me that she, too, is getting cancer treatment at Stanford.

She came to work for Dr. William Podolsky, she told me, because of the high level of skilled care they give cancer patients. She told me she understood that I’d be scared but not to worry. “They’re the best.”

So I’ll add one more thing to the list of reasons I believe this cancer is gone for good. I have been my own healthcare advocate. I have tracked down and secured the very best doctors to treat my particular disease.

Faith! Gotta have it. Gotta keep it.

(Psychic coincidence: as I wrote that line and satellite radio blared through our house speakers Alejandro Escovedo came on. The song: Faith. “You gotta have faith,” he’s singing over and over!!! Another sign from the universe! This world is not done with me yet. I have faith.)

I’m now up to the radiation portion of my grand slam cancer experience.

As my mastectomy wounds heal, I’m meeting with radiation oncologists to plot my course. My big dilemma? Where to have it done.

In a perfect world, I’d keep on at Stanford, where I love my cancer team and have received exemplary care.

But I’ll need 25 to 28 exposures five days a week. I cannot possibly spend six hours a day on the road making that trip from Fresno.

So the questions become: Can I get equally good care in Fresno? Will I be able to let go of my Stanford security blanket and believe it’s as good? If not can I find housing in or around Palo Alto for a period that includes Thanksgiving and the major Christian and Jewish holidays? Will I want to spend four nights a week away from Michelle, my biggest supporter? Shouldn’t I just suck it all up now that I’m at the end and go for it?

Ayeee. What to do?

I had a very productive meeting yesterday with Dr. Kathleen Horst at Stanford, the radiation oncologist who has been following my case since the beginning. She’s very smart and seems very caring. I would feel comfortable in her care.

This afternoon I meet with someone I am told also is smart and caring, a radiation oncologist here in Fresno. He did his residency at Stanford, so I get comfort in that. My oncologist knows him, so that’s good.

I’ll have to decide quickly. Radiation needs to start as soon as next week. I have so many questions I must answer in the meantime.

So much is at stake.