Reaffirmation

About a year ago - pretty close anyway - Rick said I had to tell the doctor about the morphing mass of crap on my leg. It was a freckle that turned colour, got scaley and bumpy. Yes. It needed to go. As a matter of fact, I wrote myself a note that day. It said "remember left leg". And I did - I remembered to tell the doctor - yay me!
At first I said - it's probably just psoriasis - right? But the doctor said - "hm". We better take a sample, he said. Next month - let's see if it grows.
I waited a month - watching and waiting for any infantessimally small growth on this dime sized spot on my leg. Was it bigger? Had it changed? Really though, I couldn't tell.
I dutifully returned in exactly one month to the doctor's office. He measured it all again - and it had almost doubled in size. I guess I really couldn't tell. He took a biopsy and sent it away and I left with a hole in my leg that hurt like a bitch about the size of a pencil.
I waited the 2 weeks and started calling for results. Nothing is back. Wait something is back... I'm going to have to have the doctor call you. That is never good.
It was something called ExtraMammary Paget's disease. I was shunted from the family doctor over to the Dermatology clinic. They apparently (and you'll find out why apparently is the right word later...) know more about this kind of thing.
Extramammary Paget's is a form of skin cancer. A secondary cancer really. It is caused by a base cancer somewhere else in the body and manifests itself somewhere else. It needed to be removed - and soon.
But beyond removing the skin cancer, we needed to find out what other cancer was causing it. Did I have undiagnosed breast cancer, lung, brain, bone, colon, bowel, gyne....where was the evil cancer bastard hiding?
I remember going home - telling my husband and just sobbing for a day. A full 24 hour day. It took me about a week to start to tell people. Its hard to explain to people that you have skin cancer - which lets face it, is really nothing - and beyond that you have another cancer that no one knows what it is and how to find it.
EMP is rare they kept telling me. Only about 200 people a year are diagnosed with it. Of those people about 10% - or 20 people in the world (or as I like to say - in the known universe) have no underlying cancer. My hope was to bank on being one in 20. I defy the odds a lot - surely I could be that rare!
I had the excision in May. They cut out a chunk of my leg that was 4 inches by 3 inches and one inch deep. I left a divot in my upper left thigh and a scar like a catterpiller.
When the dermatologist called me back with the results - he confirmed that indeed it was EMP and the testing should begin for all the underlying possibilities. In June and July I had: a bone scan, a abdominal CT scan, MRI, Gyne Ultrasound, a mammogram, colposcopy (you don't want to know but they put a camera up your lady parts and use a knife - un hm!), a chest xray, a thyroid ultrasound, blood tests and my personal fave, a colonoscopy.
The stress of the tests was overwhelming! Everything - every last one came back negative. There was relief after I received the results of every test. Thankful that it wasn't the "cancer of the day". But dread as well as my possibilities dwindled. All I have left is....... and the vain hope that its just independant.
In July I was told that the underlying cancer must be dormant - meaning not manifesting itself YET. YET being the operative word. For the last six months everytime I've had a headache it had the potential to be brain cancer and every diarreah signaled bowel cancer. I had an overwhelming sense of foreboding that I cannot describe to you.
The entire time that this went on I learned a lot about myself.
I am a consumate faker. I pretended that I was fine 90% of the time when in reality the thought of leaving motherless children filled me with abject terror. I was overwhelmed by anything and everything but my ability to fake that I was fine was astounding, even to me.
I have amazing friends. From my best friends who made me feel more loved than I ever had before to strangers on line who through this time became friends - everyone and I mean everyone - was amazing. The love and support people show someone who is in crisis is just astounding. Its a pity we don't do that for each other all the time.
I can change my own life. I met a boy and this boy helped me to see that the power of my own free will over the things that I think and the things that I say and what I eat and what I do and who I have in my life - that power is all mine. And I exercised that power in a bunch of places. I changed my attitude, I changed my direction and I believe I changed my own life.
That being said, I returned to the hospital last week to follow up with the Dermatological Oncologist - skin cancer doctor to you and me. This "expert" on EMP had been out of the country until just this month.
She took one look at me and said - who told you this was Paget's disease?
The doctors.
When? Why? Who? Based on what?
I explained the long involved gruelling tests I went through. I told her about the biopsy and the excision and how BOTH had come back from the pathologist saying EMP. I told her of the doctors and technicians I had seen. All the year of searching.
And her response? I think they are wrong.
She pulled up the pathology - checked it herself again - and sure enough they were wrong. Apparently, EMP and another cancer, a squamous cell carcinoma called Bowen's disease are exactly the same except for 2 things. And the other pathologist just made a mistake.
A mistake.
They just made a mistake.
For one full year of my life I went through the absolute hell of thinking that I had a disease that had the potential to kill me. I believed that somewhere inside me lurked an illness that had killed my father in 6 months and now, for some unknown reason was coming after me.
But they made a mistake.
How is the Bowen's treated? - I managed to stammer out....through removal of the lesion. And since the margins were clear on my excision, it was removed - totally and completely.
The cancer is gone.
I am done with it.
I don't have an underlying cancer.
There is no primary source.
Its all gone.
All of this information in a 2 minute conversation. I had spent a year thinking I was dying and now I am totally fine in a manner of minutes.
So yes. I am eternally grateful for the incompetance of other people. Hurray for the doctor making mistakes.
Hurray for EVERYONE being wrong.
Someone suggested to me that it was the power of positive thinking that CHANGED that diagnosis. A bit of good karma induced revisionist history. Do I believe that is possible? Hell yes.
Do I think that the changes I made in my head and my life have made SUCH a difference that the gods decided that I deserved a second chance? I hope so.
I am grateful every day to be here. To do what I do and love the people I love and know the things I know.
Why has it taken me a week to say anything?
Because its hard to adjust.
One person suggested to me that I got off on the whole "I'm sick - I'm dying" vibe. And I have to tell you - that is totally not it at all. There is nothing glamourous about being someone that people pity. There is really no WORSE feeling, to tell you the truth.
I feel like I spent a whole year CHURNING through every emotional rollercoaster. I put on that brave face - and now I have to take it off. That's a big adjustment.
But I'm ready now.
I no longer have cancer.
Its gone - cut out. I am in the middle of my life. I've changed my attitude, my diet and my outlook. I thank you all for being so amazingly wonderfully supportive.
I promise not to eat steak - eventhough I changed BECAUSE of the cancer. I promise not to take things like my health for granted - eventhough that is SO easy to do. I promise to use sunscreen. I promise to keep telling those that I love and value how very much they mean to me.