Jill's Story

It seems like so long ago yet I remember it like it was yesterday. I didn't know it at the time, but it was the beginning of a journey that would affect my life in ways I never thought possible.

It started like any other routine gynecological visit. Nothing unusual for a 37 year old mother of two young boys. A simple pap smear, internal exam, quick breast exam and I'm out of there. But this time was different- the gynecologist is asking "what is this?" No, I haven't noticed it before, but it's definitely a pea sized lump. "It's probably nothing" he says. He's almost tempted to just watch it, but maybe it's better to get an ultrasound and a surgical consultation just to be on the safe side.

I'm sitting in the surgeon's office in my lovely little paper top. He looks at the ultrasound report and feels my lump. "Probably nothing", he repeats. But again, maybe it's better to biopsy it just to make sure. A week later I'm back in my paper top alone in his office awaiting the results. After all, everyone's pretty confident that it's nothing. I'm healthy, active, have no history of breast cancer, and I'm too young for it anyway. But now he's reading from a chart and I think he said something about cancer. He's still talking, but I can't hear anything he's saying. His words are inaudible sounds drifting just under my consciousness. I just want to put my clothes on and run. The paper top feels smaller as I become more vulnerable by the last word I heard- "Cancer".

I have my lumpectomy and it goes according to plan. I'm sitting in my paper top once again for my post-op visit. This time my cousin is with me. Again the surgeon's reading from his chart. His eyes never meet mine, but this time he's saying "mastectomy". Something about DCIS in the margins. My cousin says we need a second opinion. I can get all the second opinions I want because he knows. He's done the research. We get copies of my records and leave. I'm broken, torn apart. How could this have happened in such a short time? I'm healthy. I feel fine. I'm young.

I fly to New York for a second opinion at Sloan Kettering. The doctor doesn't agree. There was DCIS in the margin after the first resection, but after the surgeon went in again the margin was clear. Go back to Florida and have radiation in case there are wayward cells left behind. Women who have lumpectomies do just as well as those who have mastectomies. Your tumor was small and node negative. We'll probably never hear from this again. I'm a good patient and do exactly what I'm told. I have my radiation, I take my Tamoxifen for five years. My oncologist says it was a fluke and I'll probably be fine the rest of my life. I faithfully see him every 3 months, then 6 months. I have my mammograms like clockwork every 6 months, then every year. I'm cured. Lucky me.It's 11 years later and it's like any other routine mammogram. But wait, there's something suspicious in the same breast. It's probably nothing, but we should biopsy it just to make sure. Am I having deja vu? Is this some parallel universe or is it possible that history is repeating itself? "Probably nothing" has taken on different connotations to me these days. I've just gone through a stressful divorce and put myself through school. I'm ready to graduate. This can't be happening again!

So I have a biopsy, which is botched and tests negative. I develop a hematoma from hell that refuses to go away. Three months later I have a PET scan, which lights up like a Christmas tree. I have an MRI, which now shows two spots. Another biopsy follows, which confirms my worst fears. It's back. Like a stalker who goes into hiding but who's never really more than a stone's throw away. The cancer is back.

Another surgery, this time a mastectomy with reconstruction. I have only one real choice for reconstruction- an expander to stretch the skin for an implant to be placed at a later date. I'm too thin for autologous tissue transplant, but I've had radiation so an implant's slightly risky. If it doesn't work I'll be strapping a Ben and Jerry's cup to my mouth like a feed bag.

The expander works like a charm and I have my exchange surgery. Everything looks good according to my surgeon at Sloan Kettering. Again the two tumors were small and node negative. Go back down to Florida and follow up with an Oncologist. Maybe take Tamoxifen again. You'll be fine. Famous last words.

A few months later, I've graduated my physical therapy program and landed a job in an outpatient clinic. After being primarily a stay at home mom for almost 17 years, I'm really excited about this new chapter of my life. But one day I hurt my back and there's a lump back there. I shouldn't get ahead of myself, but in my heart I know. Once you've had cancer, even a sneeze is suspect.

So when the Oncologist tells me that my cancer has spread to my liver and bones, I'm not surprised. Somehow every bout with the disease has made me stronger, more resilient. I think nothing can shock me anymore. But when he tells me I can be neither cured nor treated, I'm shocked and appalled. He says anything that can be done for me is purely palliative. There are medicines, but they're limited and will eventually stop working. We can start with one, wait for it to stop working, then try another, and so on. I know that the unspoken revelation is that sooner or later they will run out of medicines.

I go home thinking that this is just not good enough. I'm not good at waiting, especially for something so ominous. I need to take charge and exercise some control over my destiny. So I search for an alternative, but what I find is a new life. I feel that women with metastatic breast cancer are the forgotten warriors. We battle the disease on new levels, but we do it silently. We're the ones they don't talk about. You always hear about all the new treatments, but never about those of us left behind by conventional medicine. There's something about hearing the word "uncurable" that sucks the air out of your lungs and leaves you deflated. There's something about being told you have Stage IV when there's no Stage V. Where does that leave us?

I've decided to follow an alternative route. It's a nutritional approach to cancer treatment. I take digestive enzymes and supplements, I drink green juices, I eat my organic, vegan food in its raw state to preserve the natural enzymes. I meditate and go to Reiki circles. I feel and look healthy. I've been told I glow. My last scans found no liver tumor. Most of all, I feel strong and empowered. I'm taking control and I'm proud of my fortitude. I call myself a survivor, because that's what I'm doing every minute of this wonderful life!