Tracie Fights Back

Archive for November, 2010

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.

I had a long and productive day at Stanford yesterday, including my second round of Herceptin.

First, Dr. Carlson was back from his sabbatical.

I was worried when he left in July, but of course I was in the capable hands of his PA Kate Pose, the most organized and efficient person in the business, and Dr. Mollick, aka Dr. Nice. But in hindsight it’s kind of cool he was gone during the awful grind of the last months of chemo, trial drugs and the bilateral mastectomy. He could assess the big picture and see me stronger on the other side. On Tuesday he called my response to the treatment so far “wonderful.” And he smiled when he said it. Can’t do better than that.

The pathology report on the breast and lymph glands taken by the surgeon show that cancer in the breast is dead, and just a speck remained in the sentinel lymph, the first drainage stop for the breast. Dr. Carlson said the other 6 lymph nodes looked clear. While that is a good sign, it doesn’t relieve our worries or negate the need for radiation. Not a lot is known about how the lymph system and cancer work, I’m told. Did the cells even move past the sentinel gland, or did they bypass all of them and go someplace else? Of course, the chemo and the Lapatinib are designed to track them down. Dr. Carlson said I would receive radiation to my chest wall, naturally, but also to the lymph glands that remain in my right arm and the ones in my upper chest leading to my head.

The danger is that it can kill those fluid-draining glands and leave me more susceptible to lymphedema, which, if established, would leave my right arm looking like the front leg of an elephant. Not pretty and not very functional.

So, when I mentioned my worry to Dr. Carlson, he had a plan (as he always does). A cardiologist at Stanford is an expert in the condition and is conducting a study to attempt to identify the lymphedema in its earliest stages to head it off. He said I would be a good candidate. Katie wrote up the referral and the scheduler called me by the end of the day!

The woman who sets up appointments said that the doctor is very popular because of his specialty and appointments are “a long way out.”

But I’m Tracie Cone, lucky in cancer,” I thought very loudly.

A few seconds later she said, “Wait, I have a cancellation for this Thursday. Can you make it?” Of course!

Lucky me.

ON A SOMBER NOTE:
I am sad about the passing from cancer of someone I’ve come to think of as a friend, though I never met him in person. Charlie Frye lived in Belmont, N.C., where I went to high school and my mom, sister and her family still reside. Charlie attended my niece’s wedding in June and I met him when they skyped the wedding and reception to me. He was my inspiration: recently through with chemotherapy as I was just starting. There he was dancing and holding a glass of wine! He gave me hope that I would emerge to dance again at the end of all of this. His sweet wife, Cindy, became an email penpal, offering me lots of prayers and encouragement these past long months.

A month ago Charlie took a turn for the worst. He spent the last week in ICU in a Charlotte hospital as the cancer spread through his lungs. My niece Paige called me Monday to say he had passed that day.

I used to read obituaries in the paper. I stopped since my diagnosis because I hate to hear when cancer takes another life. I’m sad for people I don’t know, and sad for me, too. It’s scary for sure, especially when it’s this man, who gave me hope.

Charlie was a fighter, as I am. I’m glad I got to know him, even if it was through our mutual bond of disease. If you have a connection with God, please pray for Cindy and his family.

And Charlie, I’ll keep fighting.