Sometimes it’s good to be in the dark — to not know all the facts and to just happily take things as they come. I was somewhat in the dark when I had my lumpectomy. A doctor told me I needed surgery and I had it. I did a bit of research but I mostly placed my trust in the surgeon and didn’t really question the side effects of surgery, the possibility of death that comes with any major operation, the long-term implications like lymphedema. I just had the surgery. But that was seven months ago. Since then, I have been bombarded with options and decisions and I have become a professional information seeker. I want to know the good and the bad, the statistics, and the personal stories of others in similar situations. This helps. But it also scares me.
When my oncologist suggested I consider taking Herceptin as a preventative treatment, he told me there are possible long-term effects on the heart. He said there are not many short-term side effects, other than possible fever and chills at the time of infusion. But like all medications, there are all sorts of possible side effects, many of them rare. My oncologist did not name them all — perhaps they are statistically insignificant. Maybe I should have taken the information he gave me and made my decision — which would be to proceed with a therapy that can give me a 50% better chance of survival. But like I always do, I looked for more information on Herceptin. And I found all the possible side effects.
There are many possible side effects, most of them not likely for me, but what worries me is the fact that 15 women have died from Herceptin. Out of 25,000 women in one study, 62 had an allergic reaction. And 15 of these 62 died. I’m sure just as many people have died from the chemo drugs that have already been pumped into my body. And I’m still alive. People have died while having surgery. I’ve had several surgeries in my life. I survived them all. Women have died in childbirth. I’ve had two big babies and could have had major complications — but I didn’t. I survived and so did my babies. So I know the liklihood of my having serious problems with Herceptin in probably low. But it’s on my mind.
The same oncologist who suggests Herceptin once told me to stop reading. He said that we usually seek information when we are confused or worried. And in these states, we focus on the negative angle of the information. Which is what I do. I bury the fact that thousands of lives will be saved by Herceptin and I obsess about the fact that a few have died from it.
So I am still wondering about this drug. My gut tells me to do it — and I probably will — but first, I must find my way out of this maze of information.
Information is a gift. And it’s a curse too.
I am returning to my old self. My hair is growing back — and on most days, I actually like my dark, short, wavy hair. My skin is back to normal which means the effects of radiation are gone — no redness or irritation or pain. Just a regular armpit with a few scars. My menstrual cycle has returned — so I will not enter menopause at my young age and I now have back the option of getting pregnant. There are many issues to consider, and it’s recommended that I wait one year before making a decision, but the choice is mine and that is enough to make me happy for now.
My energy is normal again too. Joey and I were on my bed the other afternoon, watching TV. It was the first time in a long time that I let my body rest without fighting sleep. I was wide awake, not tired at all. There were times in the past months when fatigue surrounded me. One day I feel asleep in a living room chair and woke to Joey saying, “mommy, did you have a nice rest?” I am no longer desperate for sleep during the day. I like that.
Today I saw my surgeon again — seven months after he removed my lump and four lymph nodes — and he looked at my breast for a possible infection. He determined it is not infected. He said I am well. He told me I’m good for another 10,000 miles. I hope I exceed 10,000 miles.
About a month ago, my sister Tracy called me on my cell phone — I was at a dinner party with John — and she asked me if had taken the drug Herceptin for my breast cancer. She said there was going to be some big announcement on the news about this drug and she wanted to know where I fit into the puzzle before she watched it. I told her I had not taken it. My oncologist did not recommend it due to heart toxicity and unknown benefits. I fit the profile for taking the drug — I am HER 2 positive which means my tumor over-expressed a certain protein that makes it aggressive. Herceptin is designed to combat this over-expression and reduce recurrence from an aggressive tumor. But like other drugs, the potential long-term side effect (heart damage) outweighed the benefit. At the time anyway. Now things have changed.
Today I saw my oncologist for a check-up. He told me his opinion on Herceptin has changed. That big announcement Tracy saw revealed a new study reporting a significant reduction in recurrence for patients like me. My oncologist said the new report on this drug is the most impressive he’s seen in a long time — and he thinks I should now consider taking Herceptin. He is not completely sold on it because of the heart toxicity — there is no way to predict what the long-term affect could be for me when I am much older because the drug has not been around very long. But he seems to think the benefit might just outweigh the gamble of what the drug may do to my heart. It was reported on one website that:
“Data showed that Herceptin given in the adjuvant setting with chemotherapy to Her2-positive breast cancer patients significantly reduces the rate of recurrence compared to chemotherapy alone … Herceptin’s cardio toxicity data was also presented and it was found that although there is some risk, Herceptin given with chemotherapy was found to have acceptable cardio toxicity and that the benefits of the protocol outweighed the risk. It was stressed that these risks must be discussed by doctor and patients and that patients must be carefully monitored.”
So I have three weeks to make a decision. If I decide to proceed with this therapy — which in the broad sense is considered chemotherapy but is more specifically called immunotherapy — I would have a sonogram of my heart for a baseline reading so I could be closely monitored through therapy. Therapy would be administered via infusion which means the drug would enter through my port over the course of 90 minutes. I would go every three weeks for one year.
My gut — which seems to have guided me well so far — tells me to accept the therapy. The benefit seems to be clear and while the long-term affect on my heart is unknown, there are no significant short-term side effects (like nausea, vomiting, hair loss). After two hospitalizations, I won’t rule out the possibility that my body may suffer from the therapy, but my oncologist is not worried about side effects that would affect my normal functioning.
So I thought my treatment was complete. And perhaps it will go on for another year. I am not overly anxious about this — it may be the Zoloft that cuts down on my anxiety or it may be my weekly counseling sessions that are helping me process overwhelming information. Regardless, I plan to keep tossing this new dilemma around in my head until I feel a definite sense of direction.
My hat is off. My wig is off. I am now a short-haired brunette and today I am confident. I went to a hair stylist this morning who colored my hair a bit — she added a bit of reddish brown to even out the color — and shaped it up around my ears and neck. She played with gels and pastes and tried to find something to give me texture and lift. Hairspray did the trick. And a blowdryer applied to the wet hairspray makes my really short hair stick up a bit. This makes me feel okay. I didn’t like the completely flat look but this new look is okay.
I unveiled my new style at Joey’s preschool when I picked him up. The reaction was positive. Joey said, “you don’t look any different.”
I feel different — with this new length and new color. But I feel free too — free from hats and wigs and cancer. Free to be my new self. Yeah.
Photo: My niece (Jordan) has more hair than I do.
Joey is a champ. He went to preschool for the first time today — after 4 1/2 years of staying at home — and he did so well. He cried a bit when I said “goodbye” but the teachers told me he recovered and had a great day. He played indoors and on the playground, had circle time, made a lion out of a paper plate and construction paper, went to the chapel — where he said a guy named GOD talked to the kids — ate a snack, fed the classroom fish, went to the potty, and then gave me a big hug when I arrived to pick him up. Since we’ve been home, he’s told me about a boy named Zachary and how he helped clean up when the “clean-up song” was played. He got a sticker for being a good boy, and he told me how he really likes his teacher’s hair. He wonders how she’ll wear it the next time he sees her.
I think Joey will see his teacher again tomorrow. I had intended to send him to school on just Mondays, Wednesdays, and Fridays but I think the continuity of going each day may be a more solid start for him. Once he settles into his new routine, I can cut down on the days if necessary. This way, Joey will get to experience the theme of each day — bible day, craft day, water day, pizza day, and music day.
This transition for Joey — and me — has been in the making for quite some time. I thought it would be hard for me to see him go and I have long thought he would resist the whole notion of school. But today, I think we both were ready. Joey was confident and did well. And I was confident and did well. And for the first time in two years, Danny got hours of individual attention. Danny hopped up on Joey’s bed and snuggled all the stuffed puppies and alligators and dragons that Joey usually keeps to himself. Danny giggled and smiled and squealed with delight.
And we are delighted to have Joey home — to know he survived his first day of school and to witness his new excitement about this phase of his life.
The other day Joey emptied all of our video cassette tapes from their boxes. He made sure each box had an opening at its top and bottom and he slid the boxes on his arms and legs. Each arm and each leg had a display of about three boxes. He looked a bit like a robot, his arms and legs held firm by boxes. He shuffled when he walked and he created all sorts of stories about these boxes. Mostly, they were “protectors.” Like armor, maybe. He likes knights and swords lately so it makes sense.
Joey wore his boxes with me to the grocery store. He struggled into the van and managed to buckle himself into his car seat. When we arrived at the store and he was wobbling through the parking lot, he said, “Let’s see how many people look at me.” He knew people would look. He knew his attire was different and out-of-the-ordinary and he wondered what reaction he would get. And people did look. Some smiled and some had blank stares. Before long, Joey peeled his boxes off — he was starting to sweat — and walked through Publix as he usually does, asking for cookies and candy and balloons.
I wish it was easy for me to remove my wig and walk freely in public with my short, dark, and curling hair. Something makes me not ready. I know part of it is that I don’t love what I see when I look in the mirror. My whole appearance is different. I feel naked without my shoulder-length, blond hair. I wish I could see this time in my life as a new beginning, with a new look. But instead I feel self-conscious and hesitant to unveil what lies beneath my borrowed hair and hat.
I wish I was more like Joey. I wish I could walk into the grocery store, proud of my new hair and eager to test reactions. One day.
Today I attended an annual MOMS Club banquet — it’s a celebration of the past year, full of playgroups and club events and hard-working moms! I joined the Gainesville MOMS Club when Joey was 10 months old. I intended to find friends and socialization for my stay-at-home kid. And I found both for him. But as I look back, I realize I may have gained more from this club than Joey did. Much of what I gained came this year. And it has touched me in powerful ways. So I am sending this e-mail to the moms in this club.
I wish I could have stood up at the banquet to say this publicly but my emotions are a bit overwhelmed lately and I don’t know that I could have spoken clearly. But what I want to say is this …
Thank you from every fiber of my being for your support and love and encouragement and attention throughout my journey with breast cancer. At the banquet today, I realized how fortunate I am to have this support system of moms. I knew I would make it through my treatment (which ended last Friday after 6 months) — I really had no other choice — but I did not know I would have so many people lifting my spirits and holding me up. I have received flowers and cards; e-mails and phone calls; hospital visits and home visits; cozy socks and a quilt that I sleep with every night. I have spa gift certificates and a new scrapbook. And today, so many of you checked on my progress. You are sincere and loving women and I can honestly say I would be lost without you.
If you wonder why you pay $20 a year for membership in this club, just ask me. It’s more than finding friends for our kids and a social outlet for ourselves. It’s about deep friendships and shoulders to cry on. It’s about giving and sharing. It’s about helping save lives — like mine. Recovering from life-threatening illness takes physical strength but it takes so much mental strength too — you all gave me the strength to fight. I will never forget what you all have done for me. I am forever grateful.
mom of Joey (4 1/2) and Danny (2)