Tracie Fights Back

Archive for October, 2010

The interventional radiologist didn’t think he could fix my old port line for good. Seems it was too short. So today I got a new one. Long surgery but so far it works and I don’t have the pain I suffered during the first installation debacle. I think I had a better team.

People comment to me all the time “hasn’t this summer gone by quickly?”

Uh, no. It has been the longest of my life. Every minute has crept as if it were 15. You are adrenal-ized crazy people speeding through life, so of course your summer sped quickly. If you find a way to slow down, time will slow too.

Because my current fulltime job is healing, I live in the moment now whether I want to or not. Some of those moments have been pure torture; others filled with love and joy.

This was the summer I spent learning about my will to live. This was the summer I learned that love and friendship can carry a person through anything. This was also the summer I learned to put real suffering in perspective. I would not have learned those things if time had sped by me.

As time has passed, so have the milestones I use to measure my progress. Today I’m happy to mark the passing of another “last.” Just like I celebrated my last round of chemo Sept. 21, today, 21 days later, I celebrate taking my last dose of the trial drug Lapatinib.

They are the bright orange horse-sized pills I’ve taken every day on an empty stomach to boost the chemo Taxatere. It’s a drug normally given to people after their cancers have metastasized. Mine, thankfully, has not, but the trial is to see if giving the drug up front will stop that from happening to me down the road.

They have blistered my mouth and caused my skin to break out in itchy rashes, but it’s better than getting cancer again. I’m hopeful that whatever researchers learn from my experiences will help make someone else’s a little easier.

On Tuesday I head back to Stanford for a variety of reasons: I’ll get the results of my MRI to see how small my breast tumors have shrunk in preparation for my mastectomy Oct. 20, I’ll have a angiogram-like procedure to fix my blankedey blank port, then, once it’s operational again, I’ll get my first infused dose of Herceptin, the biological agent designed to turn off the gene that makes my type of cancer grow.

I’ll need that every three weeks for a year. By October 2011 I’ll be done.

So no, my summer hasn’t passed quickly. Then again, I would not have been able to accomplish quite so much if it had.

This bears repeating here because it seems that some people are idiots. I’m talking about what not to say to someone who has cancer or any other life-threatening disease.

I’ll relay something that happened Friday night at a party in my neighborhood. I was introduced to a guy who works in what I hope is a limited capacity in the cancer treatment center at Kaiser Hospital in Fresno. Someone thought we should chat because of our mutual circumstances, even though I wouldn’t have sought out a muscle-bound meathead for a conversation

This is how the conversation started.

“Oh, breast cancer. My cousin died of breast cancer two weeks ago. Hmmm. Let me think,” he said as he closed his eyes and pretended to engage his brain. “Yes, two weeks ago today.”

I was speechless. I wanted to tell him he was an idiot for saying that to me, but before I could he added this:

“Ya, she went through treatment a few years ago and they thought they had it. But it came back, and before she knew it the cancer had spread throughout her body. They put her right into hospice.”

What. A. Dick. I turned around and walked home. But that damned conversation has been rolling around in my bald head ever since.

I feel bad for her, but I know in my heart that’s not me. In fact, I already feel and think of myself as cancer free thanks to the wonderful treatment and trial drugs I’ve received and the lifestyle changes I have made.

For several weeks, without being really conscious of it, I have begun to think of cancer in the past tense.

The operations I’ll have this month are technicalities. The slow struggle to regain strength is the after-effect of the drugs that cured me. The 28 days of radiation that lie ahead will be a precaution.

Positive energy is everything to a cancer patient. So if you know someone who is going through this hell tell them they can do it, tell them about other people who have made it through and are living healthy lives, tell them you have a gut feeling they are going to be OK, or just tell them you’re thinking about them.

Or don’t say anything at all.

Have you ever wondered what’s under your nails? Neither have I, but now I know.

As part of my ongoing sloughing of the old to reveal a new me underneath, my fingernails are now popping off. It’s creepy, but not as bad as it sounds, as long as I don’t need to get anything out of a pocket or to pick up something small. Catching a loose one on something is the only time it hurts.

That disgusting looking thumb in the photo looks like it is growing a new nail, but it’s not really a nail. It feels like skin, but maybe nails grow like seashells, growing increasingly thicker as time passes. At least there is no more pain with that one. Only nine more to go, then my toes. Sigh.

I know from the past experience of dropping something heavy on my big toe that nails take a year to come back. It means I’ll be going back to work in January bald and with no fingernails, eyebrows or eyelashes. I wonder how that will go over with the people I have to interview?

I’m happy that today my nails are my big worry. I’m getting over the achy weekend that took me back to the ER Monday. I feel good as long as I’m sitting, but weak when I try to do something.

That’s normal, I’m told, after all I’ve been through. Still, I am eager to get my body in fighting shape so five years from now we can list ourselves among the breast cancer survivors.

Patience has never been my virtue. But in the race between me and my nails getting back to something approaching normal I know in my heart I’m going to win by a mile.

Finally I feel well enough to report more fully what has been going on.

Chemo, as I said earlier, does not go lightly. The final tough round I couldn’t wait to end was prolonged by raging fever and severe body aches worse than any flu.

On Sunday my temperature rose quickly from near 100 to 101.5. At 100.4 my oncologists instructed me to get to the nearest ER. Having tried that before in Fresno and been told to get in line behind 100 other coughing, bleeding people, we opted for urgent care instead.

On the bright side, there was no wait at this office on the second floor of a commercial building. On the down side, we now know why.

When it came time to test my urine for a possible bladder infection (the reason for only two other temp spikes), the nurse handed me a cup and said “go down to the restroom by the elevator.”

“Are you serious?” I asked, unable to believe in my feverish state that there was no restroom in the office. “That’s so bush.”

Obviously I did not endear myself to them. I told the doctor about pains in my lungs when I breathed deep. He listened quickly to my lungs, and by quickly I mean all of 10 seconds in three places, never even asking me to breath. At least I got the prescriptions I told him I needed (ones I had had before).

On Monday my medical team at Stanford wanted me to go to my primary care for a better exam. They listened to my lungs, thought they heard something, gave me a breathing treatment and prescribed a chest XRay, which I immediately went to have at St. Agnes Hosptial.

By now it’s 4:30 and I’m back home. I called Stanford and reported my progress.

“What about the blood work?” asked Sylvia the triage nurse.

Uh oh, nobody did blood work.

Sylvia ordered me to the ER because my team feared I could have no white blood cells or ability to fight whatever infection could be causing my temperature. Pneumonia was a possibility. If I showed low levels, I would be admitted for IV antibiotics.

I spent the next 8 hours there, first waiting in the car to avoid sick people, then stashed in a hallway in the bed I refused to give up once I got it. Lots of tests, lots of waiting.

When the blood tests and X-Ray cleared me of pneumonia, the nice ER doctor said I might have a blood cot. He ordered a CT Scan. It showed no obvious clots, but perhaps one at the end of my port tube (my favorite thing). So I left knowing less than when I arrived.

So, what’s wrong with me? Why do my lungs hurt? Why did my temperature spike? Dr. Nice says it might be tracheal bronchitis, which is better than pneumonia by a long shot.

The bottom line is I feel a little better today. Lethargic but not achy.

In this process measured by baby steps, I’ll take it.

But source of infection unclear. Had CT scan too. We’ll see. We got home in the wee hours.

I may have pneumonia related to something called neutropenia. It means no white blood cells. Awaiting tests. If pos they’ll keep me. Chemo is the gift that keeps giving.

I’ve told you before that this cancer experience has changed my life for the better, as hard as that has always been for me to believe, too.

Cancer has shown me how much I’m loved, and how much having all of you sending your positive energy my way will carry me through this. And then there are the signs from the universe that I will be fine when all of this is over.

Today I offer this from my old friend from high school Elaine Hoover, who participated in a walk on Saturday to raise money for breast screening for the poor and uninsured in her community. She was wearing the Team Tracie t-shirt my basketball teammates designed.

How do I figure into this, besides the fact that she walked for me in that shirt? Just read what Elaine said happened before the walk began:

“This was the first time I’ve participated in the Women’s 5k Walk/Run in Greensboro, so I got to the race early. As I was writing your name on the race bib a woman came up to me and wanted to read my shirt. She asked me about you and I told her about the journey you have been on since May. She told me she’d pray for you and walked away.

I didn’t know she was the emcee of the program until a few minutes before the race began when she said something from the stage about meeting a woman in a Team Tracie shirt. She asked the racers to raise their hand if they were walking for a friend today.

And then she said…’Let’s hear it for Tracie and all of the women we are walking for today!’

And the crowd went wild!

The good thing about walking and not running was that I had the opportunity to talk with the people around me. So many people said something about your shirt. You are being prayed for by lots of people in Greensboro today.”

Imagine all of those people cheering and praying for ME, and all of the other women struggling with this disease.

And that is why I’m lucky in cancer.

The Greensboro walkers who cheered for me!

A year ago I didn’t even know there was such a thing as Breast Cancer Awareness Month, which kicked off October 1. During the 2010 celebration, declared today by Presidential proclamation, I will have both of my breasts removed.

What a difference a year makes, and it’s a reminder how fragile life is, how quickly it can change, and how we must appreciate every moment of it.

The sudden media emphasis on all things pink, brought on by this month, is strange to me. For months this has been my own private disease, now suddenly it’s everywhere, even product marketing.

In late September the “pink ribbon” endorsements started. Buy this and money goes to research. I’ll quote my favorite non-profit, Breast Cancer Action, which reminds you to “think before you pink.” Some companies slap a pink ribbon on something and make a donation but make products that can cause cancer. BCA calls it “pink washing.” The most obvious ones are the alcohol companies, but then there’s something as seemingly innocuous as yogurt (whose products can contain bovine growth hormones). The list is long. I am a born-again label reader.

On the flip side, a month that brings awareness and encourages research is a good thing.

This is the month women should be reminded to perform their monthly self exams and make their doctor appointments. Prevention is the key, but catching the disease earlier than I did can make treatment an easier road than mine.

One in eight woman will be diagnosed with breast cancer in the U.S. in their lifetimes. Not everyone will have health insurance and access to the best doctors, as I have had. It’s half of the reason why I’m participating in a clinical trial that can improve treatment for the millions of women who will contract my type of aggressive cancer, HER2 Positive. (The other half is because it offers my best chance at stopping a recurrence).

So please, take time this month to remind a woman you love to get a breast exam.

I sincerely hope your Breast Cancer Awareness month ends happily.

THE PROCLAMATION

NATIONAL BREAST CANCER AWARENESS MONTH, 2010
BY THE PRESIDENT OF THE UNITED STATES OF AMERICA
While considerable progress has been made in the fight against breast cancer, it remains the most frequently diagnosed type of non-skin cancer and the second leading cause of cancer deaths among women in our country. This year alone, over 200,000 Americans will be diagnosed and nearly 40,000 lives will be claimed. During National Breast Cancer Awareness Month, we reaffirm our commitment to supporting breast cancer research, and to educating all Americans about its risk factors, detection, and treatment. As we display pink ribbons on our lapels, offices, and storefronts, we also support those courageously fighting breast cancer and honor the lives lost to this devastating disease.
Thanks to earlier detection and better treatments, mortality rates for breast cancer have steadily decreased in the last decade. To advance the life-saving research that has breathed promise into countless lives, the National Institutes of Health, the Centers for Disease Control and Prevention, and the Department of Defense are investing hundreds of millions of dollars annually in breast cancer research and related programs. Through funding from the Recovery Act, the National Cancer Institute is also conducting and supporting research and training projects, as well as distributing health information, to help Americans with breast cancer and health care providers face this disease.
Knowing what may contribute to breast cancer is an important part of its prevention. Risk factors for breast cancer include family and personal history, radiation therapy to the chest for previous cancers, obesity, and certain genetic changes. Being cognizant of these possible risk factors, as well as maintaining a healthy body weight and balanced diet, exercising regularly, and getting regular screenings, may help lower the chances of developing breast cancer. I encourage all women and men to talk with their health care provider about their risks and what they can do to mitigate them, and to visit Cancer.gov to learn about the symptoms, diagnosis, and treatment of breast and other cancers.
Screenings and early detection are also essential components in the fight against breast cancer. For women ages 40 and over, regular mammograms and clinical breast exams
more by health care providers every one to two years are the most effective ways to find breast cancer early, when it may be easier to treat. Women at higher risk of breast cancer should discuss with their health care providers whether they need mammograms before age 40, as well as how often to have them. Regular mammograms, followed by timely treatment when breast cancer is diagnosed, can help improve the chances of surviving this disease.
In order to detect breast cancer early, we must ensure all women can access these important screenings. The Affordable Care Act, which I was proud to sign into law earlier this year, requires all new health insurance policies to cover recommended preventive services without any additional cost, including annual mammography screenings for women over age 40. The Affordable Care Act will also ensure that people who have been diagnosed with breast cancer cannot be excluded from coverage for a pre-existing condition or charged higher premiums.
During National Breast Cancer Awareness Month, we stand with our mothers, daughters, sisters, and friends, and we recognize all who have joined their loved ones in fighting their battle, as well as the advocates, researchers, and health care providers whose care and hard work gives hope to those living with breast cancer. By educating ourselves and supporting innovative research, we will improve the quality of life for all Americans affected by breast cancer and, one day, defeat this terrible disease.
NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim October 2010 as National Breast Cancer Awareness Month. I encourage citizens, Government agencies, private businesses, nonprofit organizations, and all other interested groups to join in activities that will increase awareness of what Americans can do to prevent and control breast cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this first day of October, in the year of our Lord two thousand ten, and of the Independence of the United States of America the two hundred and thirty-fifth.
BARACK OBAMA