Ten Rules of Cancer Land- Candid Truth about Cancer and Cowden Syndrome

Kelley's message to all the Survivors out there.

I Had Cancer

KelleyBlogYou don’t know what’s in you – until they, the surgeons, go in you.

The first thing we want to know – or nearly the first – upon hearing, “I’m sorry, it’s cancer,” is usually: “OMG – what stage am I?” I seem to hear countless stories about how they were stage one until the surgery showed they indeed staged Three, how devastating. Your world has just turned upside down and now the one person who you just KNOW is going to save your life gives you false info. WHAT! We need to remember that Doctors are human, they don’t have x-ray vision, they don’t know what is in you – until they go in you.

I am not just any patient.

My first kidney doctor taught me a valuable lesson: I am not a “normal” patient. Oh, sure I’m chatty, interactive, enthusiastic to a fault. But he taught me when he said, “Oh let’s call “IT” a cyst,” and “IT” turned out to be stage one Kidney Cancer that I am not just any patient, I am unique. I am a mutant carrying a PTEN Tumor Suppressor Gene Mutation that labels me with a rare disease called Cowden’s Syndrome. Truthfully this makes me a Rockstar in the world of genetics. It means that everyone who is a part of my medical team MUST put on the right ‘glasses’ from behind which they view me. Otherwise, any assumptions are off. I am, as I said, a mutant. I like to think of myself as an X-man.

I am part of the team.

Shockingly as I lay in pre-op before my kidney surgery, I found myself surrounded by a team of good-looking men. DOCTORS! (Why this didn’t happen 15 years ago when I was dressed in more than a sheet I’ll never know!) They were launching into what appeared to be a serious conversation that was the download for the actual surgery. I lay in disbelief as I listened to details and as they all agreed upon procedure, one at a time, all heads turned to me –for my agreement. I questioned them, trying to lighten the mood, “You don’t want me to agree, do you?” The head surgeon smiled and said, “Yes you are part of the team.” Wow. Yes, I am.

Where your heart is full, there you will heal the best.

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I interviewed seven surgeons, SEVEN. Any cancer patient knows that takes a ton of time, patience, and stamina. I was asked, “What are you doing? You’re wasting time! They are all going to tell you the same thing!” I replied, “I get it but who is the best?” The patient-doctor said to me, “They are all good, and some days they are all bad. Pick one – where your heart is full, THERE you will heal the best.” Wow. Revelation! Where we have comfort, trust, hope, we heal. We move forward.

Cancer sucks!

What else needs to be said? Maybe just adding the famous quote: “Sometimes the only way out is through.”

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We’re all in this together.

I always thought, upon my diagnosis, “Whew, Thank God it’s not my kids,” but in reality, even if I’m the patient they are affected. Whether it is overt, subtle, or suppressed, our families will carry our diagnosis with them. Reaching out to support organizations is vital. Camp Kesem (www.campkesem.org) was crucial in helping my children cope, grow and relate to other kids whose families battle cancer. My kids are stronger because of the support we’ve had from Camp Kesem. Regardless of the need, don’t think you have to go this alone. Find the foundation for your network to keep moving forward.

Humor is healing.

But not for everyone. I have excellent cancer humor, truthfully. However, I am sure to some it can be quite offensive although the intent is just to lighten what is a terrible situation. We, as patients, need to remember to find our source of healing, is that daily yoga? A specific friend who supports you? Or humor, cracking jokes and hoping they don’t fall flat with the right audience. If we find our outlet, it helps us all. Kelley blog 4

A good doctor lets you talk.  Kelley blog 8

The Physicians are not afraid to tell you when it’s their turn to speak. Remember that incorrect kidney diagnosis from commandment #2? He is a reliable doctor I am sure, but his style and my style did NOT integrate into a successful team. He just would not let me speak my mind, and where is the peace in that? Alternatively, I have a plastics doctor who doesn’t hesitate to put his finger to his lips in a gesture of silence when it’s his turn to talk. I had to have the strength to find another Kidney doctor, and know I was doing the right thing for me.

Second and third opinions are a good thing.

How valuable it is to our peace of mind to have your path validated – your treatment plan echoed by a second doctor! If for no other reason than knowing you’re on the right track, the patient’s peace.  Find that opinion. Know you are doing the right thing, and act on it!

I have cancer – cancer does not have me!

We hear it. We read this on many cards, plaques, well-meaning pieces of art. Yah, whatever. But think about it. If we stay strong, if we remain focused on the fact that our lives move forward, we CAN do this.


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