Wrestling Alligators

By Lilla

You're walking down the street, you look pretty hot (and not because the sun is out!). You look healthy even though you're just coming back from a doctor's appointment where you've been told that the last PetCT scan showed progression and that you will be changing chemos, filling yet another prescription for Kytril (to stave off the nausea), getting used to new side effects and having to tell family that things aren't going as well as it seemed.

You bump into a neighbor who says "Wow, don't you look great, where are you going?" "To the drug store" you reply. "How are you?" she asks. "How's it all going?"

A friend of mine says that having mets is like constantly wrestling alligators. You sit at the lunch table with friends, you excuse yourself, go wrestle an alligator, smooth your hair and come back to the table. That's how it feels with each CT scan, each MRI and each time we sit in the chemo chair with yet another cocktail running through our veins.

Most of us look at the neighbor and say, "Yea, everything's fine, tell me what's going on with you"…

Posted September 28, 2009.

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Sometimes when people tell me, "You look so good, are you done with chemo?" or "You look great, do you really need any more treatment?" I feel like answering, "This is what metastatic breast cancer looks like!" I've been in chemo virtually constantly since my Stage IV diagnosis 2 1/2 years ago, with a break for mastectomy and radiation. Have also had Gamma Knife once. This is what metastatic breast cancer looks like, at least for me!

— Tilda, New York City

11//08/09

I started on navelbine in June and for the last two months I have been receiving a low dosage steroid injection prior to the chemo which I now think may be impacting my breathing. Has anyone else encountered something similar? I am considering stopping the steriod and will discuss when I se the doctor next week. So far doing well with the chemo.

Sheila

— Anonymous

Metastatic women today are a new breed. Years ago this diagnosis meant imminenet death. Thankfully things have changed and a new category of women (and men) has surfaced. We are those LIVING with Metastatic Disease. Our friends and neighbors are confused. "She looks fine, is her doctor over treating her? Shouldn't she be finished with her treatment? Should she get a better doctor? How can she be ready to die when she looks so healthy?" Fortunately we are not ready to die. Fortunately we become resilient enough to adapt to our new reality from scan to scan. The roller cosater of Metastatic disease becomes second nature. We learn to roll with the punches, wrestle our alligators AND live relatively normal lives. And yet, the longer we are metastatic, the more opportunity the cancer cells have to find new sites to invade and with each bit of news, we become a little more knowledgeable about ourselves, a little more prepared to question and discuss (getting off steroids?) with our doctors. We are STRONG women in every sense of the word. I don't know any of us who are ready to stop wrestling and give in to that ##*&^##%^ alligator - we have too much to live for and too much to accomplish!!!

— Lilla Romeo

Sheila,
I've been looking at the bcmets site (www.bcmets.org) to see if anyone else has experienced shortness of breath with navelbine or steroids and I haven't found anything. I'd suggest you go to that site and post your question, you'll probably get answers. This is really important to discuss with your doctor as shortness of breath can be caused by many things besides the meds. Let us know what happens, I'm rooting for you to stay on this chemo if it's working.

— Ilene Winkler, SHARE Director of Metastatic Programs

What is the connection between cancer and wrestling alligators please
inform me. Dottie

— dottie

Hi Dottie,
As any Metastatic woman or man will tell you, being metastatic is far from a 'walk in the park'. It is much more like a swim with alligators, where you are fighting for your life with every stroke. And yet, because this type of 'survival' becomes so routine, we tend to go about our normal lives and then turn up for treatment, for a scan or an MRI, as if we were going to the hairdressers. "Oh, I can't on Tuesday, that's my chemo day!" We leave the lunch table, go fight the alligator, smooth our hair and re join our place at the table. Someone once sent me a card that said "A woman is like a teabag, You never know how strong she is until she gets in hot water". After 10 years as a metastatic woman, I not only feel like I'm in hot water, but from the corner of my eye, I see those alligators ready to pounce!

— Lilla

I was diagnosed with metastatic breast cancer nine months ago and have been wrestling those alligators ever since. I am estrogen receptive positive, so no chemo for me, just a tiny little femara pill each day and zometa infusions monthly. My only side effects are insomnia and hot flashes. And I lost 25 lbs. on a vegan diet. Aside from the bags under my eyes, I haven't looked this good in years! So, many of my friends and neighbors don't know what to say. We want our cancer patients to get better, be cured. The struggle we face with mbc is hard for people to grasp -- living with chronic cancer is a concept few understand.

— Karen

Lilla

Lilla was a SHARE hotline volunteer and a breast cancer advocate until her death in 2010.