A draft of what I’ll say tonight at the American Cancer Society Relay for Life Kickoff in Reston, VA….
The minute you are diagnosed with cancer, everything changes. One day, you’re just like everybody else
– I was a mom with two kids, a small business, and never enough time
and the next minute, you’re a cancer patient.
Decisions must be made quickly. Will you have surgery? What kind will you choose, a lumpectomy or full mastectomy? Will you have reconstruction? Or not? You’ll have to work out the details quickly if you’re lucky enough to have the choice.
– I didn’t have a choice. My cancer was advanced the day I was diagnosed. With Stage 3C inflammatory breast cancer, which forms in the lymph channels of the breast and cannot be easily contained, my breast would be removed.
But maybe you can’t have surgery right away. You wait. You hope. You pray. You clear your schedule and become a regular at the oncologist’s office. At the lab. At the chemo ward.
– I started chemotherapy two weeks after I was diagnosed. There wasn’t much time. The cancer was growing and spreading every day. I know. Since it was in the lymph channels, in my skin, I could see it. I watched it march across my breast and up towards my throua in real time as the cancer spread. My breast got measurably heavier, and bright red, and if I looked down, I would start to panic.
But you pull it together. You go to chemo. You laugh, you joke, you ask the nurses which chair is the best spot. The best spot for having deadly chemicals pumped into you, toxins that kill cancer cells only because they kill everything, every kind of cell. Cancer cells — and hair — grow just a little faster than skin cells, and muscle, and bone. The chemo will kill the cancer, but it will try to kill you too.
– It tried to kill me. First, I lost my hair. Then my energy. My strength. Then the use of my legs. On the day I couldn’t walk anymore and was wheeled into the oncology unit, my doctor refused to give me chemo at all. It was too much fore me. So, the next week, we started a new protocol, using a lighter dose every week instead of a blast of chemo every three. I was afraid that it wouldn’t work. But it seemed to, knocking me out as it had before. It wasn’t quite as powerful, but it was every. single. Thursday. I lost my good days between treatments. I had maybe one day, Wednesday, when I could leave the house and my husband could drive me and the children to playdate. We couldn’t go anywhere else anyway, as my immune system was shot.
– We pulled my oldest boy, 2 1/2, out of school, and began to raise our two boys in much more isolation than before. Playdates were carefully screened,;no one came over if they had so much as a runny nose, because a cold could send me back to the Emergency Room, and I spent enough time there already. We couldn’t go to the park anymore, or indoor playgrounds, or even the library because of germs. Library books are loaded with germs. It was not the way I wanted to parent my 2 year old and my baby, who was just 5 months old when I was diagnosed.
But, you do these things, and you make it through. And, one day, after long months of chemo and drugs and pain meds and cancer, the day comes for surgery.
– I chose a double mastectomy, and had to change hospitals to get it, because my cancer is a killer cancer, with 90% chance of recurrence within 5 years. By removing the other breast, I reduced the risk of recurrence to 75%. As it turns out, my risk was reduced a lot more than that, as the biopsy of the removed breast showed that another cancer — a different cancer, Paget’s Disease — was growing in the second breast.
Recovery is another difficult phase; in most cases, you’re waiting to recover from surgery just so that you can be hit again with radiation — or chemo — or both.
– Radiation and I were not friends. Just think — every day, starting your day with an appointment to take off your shirt, show your scars, and voluntarily scorch your skin. A procedure so harmful that everyone else must leave the room. Day after day afer day.
That’s what it’s like to have advanced cancer. From day one, the stakes are high, and so are the challenges. Even after treatment, your body is not fully your own, not even the same body anymore, with complications like lymphedema, additional surgeries for ovary removal or reconstruction, or perhaps chronic pain.
One of the hardest parts of all this is the feeling that you are alone.
– I felt alone. I felt like I was the only one in the world that this had ever happened to. Or at least the youngest. The mom-est. Something. It wasn’t part of the plan, you see.
But it’s not part of the plan for anyone. Not the grandmothers, not the moms, not the athletes or the 10 year old boys, and certainly not the babies.
Cancer is devastating. You know that. That’s why you’re here tonight, looking for a way to help.
There two things that we can do. We can raise money for research to treat, and eventually prevent, this horrible disease, cancer. And we can keep cancer patients company, and comforted, through their fight.
The second one is something I know something about. You see, I was lucky. Lucky is a funny word to use, but I was lucky that when I was diagnosed with cancer, I had friends, and strangers, who rallied to my side.
My MOMS Club playgroup, a group of women with kids about the same age, who get together every Monday morning to play trains, have snack, and teach the children how to play nicely together, came together for me in a big way, providing support when I was ill. Every Monday, someone would call me, offering to bring dinner, to stop at the store, to help me in whatever way might be useful. They’d offer to stop at the grocery for me, Trader Joe’s, whatever, and pick something up for me while they were out. Because I still needed to go shopping, and the kids still needed treats, even though mama was sick.
Just before I went to chemo, I was scheduled to host a party for the families, to celebrate July 4th with a barbecue, flags, and backyard games. I wondered about whether to go through with it, but decided to anyway, as one last hurrah before treatment. I wondered if anyone would come, or if it would be too difficult for them to look me in the eye. Everybody came, bringing cupcakes and salads and treats of all kinds, and one mom friend of mine brought t-shirts. She’d made everyone pink t-shirts that said “Team WhyMommy” on them, and we all put them on and took a picture. I carry that picture with me today, because these are the friends that stayed with me during treatment.
They did more than stay with me. They celebrated with me, as every chemo treatment made me sicker but also killed the cancer, cell by cell. Every third Thursday, as I dragged myself out the door to chemo, saying an agonizing goodbye to my little boys and holding my husband’s hand, I would find a big pink bag on my doorstep full of notes, goodies and yummies to keep my weight up, and little treats for the kids: coloring books and matchbox cars and someone’s outgrown toy bus. Even the bag was a love note, covered with happy, inspiring words. It was a little something to look forward to on those days I dreaded.
You see, when you go to chemo you feel good; when you come back from chemo you don’t.
When I went to weekly chemo, I didn’t want to be a burden, so I told them it was okay to stop … but they didn’t stop. They stepped it up.
So my friends were a great source of support.
But what if you don’t have local friends like these? What if you’re new in town, or your friends aren’t enough? I don’t know what everyone else does, but I went online. I was a blogger, you see, a casual blogger, who had been writing for a few months at the time about raising a toddler in the DC area, and I had this outlet. I had a choice to make. Ignore the cancer, keep my privacy, and pretend nothing had ever happened? Or talk about the cancer, really talk, and try to record what was happening to me as I went through treatment?
I chose to talk about the cancer.
Since I was spending a lot of time in bed, exhausted, I decided that I would write something every day, every single day, and share the experience of being diagnosed and treated for cancer, as it happened. I wrote about going to the doctor. I wrote about the diagnosis. I wrote about the prognosis. I wrote about telling my friends, my family. I wrote about what it was like to tell my little kids that Mama was sick. I wrote about what it was really like to go to chemo, to sit in the chair, to have my body pumped full of toxic chemicals, and to get cold, so cold, from the icy mixture being pumped through my veins. I wrote about my hair falling out, and pulling it out, and crying as it fell out on my pillow. I wrote about the weakness and about the fears. I asked for support, because I didn’t think anyone could go through this alone. I wasn’t alone, I had so much family and friends, but I still felt alone sometimes.
No one can sit in the chemo chair with you during treatment. No one can stay with you when you’re being radiated, or during surgery as they cut off body parts. No one else can tell your children for you, or feel what it really feels like to tell your toddler that you’re just not strong enough to play with him today. Or the baby that you can’t pick him up and cuddle. It can be very lonely.
So I went online, during those hours when I felt good enough to sit up but not strong enough to stand alone, and wrote about the experience. And, far from people leaving my blog in droves, they actually came to read it in droves, by the dozens, by the hundreds, and on the night before my surgery, they left me over 300 comments wishing me well.
If I was down in the night, or stiff, or lonely, I was able to log on or twitter, and, soon, someone would comment or twitter or email me, saying, “Are you all right? I’m here.”
And that’s all it really took. It didn’t take anything profound. It didn’t take knowing just what to say. All it took was for someone to say, “I’m here,” and it was easier for me to go on.
After a while, I started getting these notes from readers and friends thanking me for shining a light on this thing called cancer, telling the story of cancer from the inside out, showing what it was really like, the hard parts and the struggles, but the little joys as well. People told me of their losses, their mother, their grandmother, their friend, who had died of cancer, and they didn’t know what to do, and they didn’t know how to help the people closest to them, and they lost them. But through me, they could begin to understand what had happened, and reach out, and grieve, and rejoice in the little victories.
And there was rejoicing. Because my chemo worked. My surgery worked. My radiation worked. And today, I am cancer-free.
Recovery is a little harder than I expected. Being a survivor does not mean that everything goes back the way it was. But it does mean that I have the opportunity to go on. That’s what I talk about now on my blog. That I have the opportunity. Even though it’s been a horrible year, andthere are some parts of me that still don’t work very well, it’s okay, because I was given a chance.
Maybe I don’t have as long to live as you do, and I don’t, survival statistics will tell you that, but I have today. I have the opportunity to make today count. I have the opportunity to hug my baby boys today. To make memories today, and to write stories so that they know what happened, and how very much I love them, no matter what.
You have the opportunity to make today count.
You’re here because you want to make a difference. You want to walk to raise money to fight cancer, to make a difference, to let cancer patients know that they are not alone.
Part of the funds that you — Reston Relay for Life — raise every year goes to support the American Cancer Society Cancer Survivors Network. This is an online space where any cancer survivor can log on, write, blog, and talk to other survivors. I didn’t know about this when I was diagnosed — I created my own space, and a space called Mothers With Cancer.org where other young mothers could come and talk about the experience — but the Cancer Survivors Network is out there now, and what a great place for cancer survivors to come support each other.
Knowing that there are people out there rooting for you, supporting you, walking for you is an incredibly empowering thing. It makes you fight harder. As you guys prepare to walk this year, I encourage you to talk about it as well. Raise awareness. Raise spirits. Do you know someone with cancer? Have you told them that you’re going to walk? Did you invite them to come and sit with you, and watch the action before or after your leg of the relay? Maybe you could even borrow or rent a wheelchair so that they can go around and take a lap with you. Or someone who is recovering can train with you. Breast cancer survivors who are hormone-positive, for instance, are often in training shortly after their recovery, strengthening their bodies and trying to return to normal.
You have the opportunity to help them, in a real, tangible way, both with the money that you raise, the words you say, and the action you take. I challenge you to make today count.