Still Here Alive and Kicking!

Well it's definitely time for an update. I hope everyone has been having a great summer! 

Things here are still awesome. I am still here alive and well. Also, I am still mercifully without out evidence of any disease. 

I haven't had chemo in 3 years and I think about, 15 days. My last procedure (SIR-spheres) was done almost 3 years ago this October. 

I am lucky people. Lucky and blessed. That is probably the understatement of the year.

I had my last scan in June, and again everything came back completely clean and all is unremarkable. I continue to get my blood work done every month and my CEA (carcinoembryonic antigen-basically tumor markers in my blood) is around 5 and are holding steady. 

It is so strange. If someone would say to you, "you have stage 4 colon cancer, but you just have to endure 5 years of treatment and you'll be fine," you would say  (knowing the alternative of not being fine) awesome-let's rock. Well, that's what I would say anyway. But you don't know. You don't ever know what way it is going to turn out. I still don't know. In my mind I am health-wise in a dream place-I have won the lottery. But I also realize that I am on a waiting list for it to come back. My point being is that what is horrible about stage 4 cancer is the ambiguity. 

Now I am NOT going through anything horrible. But I have been blessed and given the privilege of talking to people through a great organization Cancer Hope Network in which they match volunteers to patients with similar diagnosis' and treatments etc. In talking to my fellow stage 4ers that is what we talk about and that people struggle with the most.  The ambiguity. The doctors don't know if treatment will work. They don't know if surgery will be successful. They don't know if you will get better. Isn't that an odd conundrum to be faced with friends?

When we get sick or hurt as children or adults, whether it be a cold, flu, broken arm, sprained ankle-there is the expectancy and then the fulfillment of that expectation that you will get better. Your doctors and nurses and general common sense will tell you that. Take this, wrap that, rest for awhile-and poof you get better. That's what we are used to happening.

When people are diagnosed with stage 4 cancer of any kind, they won't be told that. They won't ever know if they will get better. You just keep trying, and hoping and praying. Things can go great and then things come crashing down on your head. Therein lies the frustration for the person with stage 4 cancer. I know because I have been there, and because I hear it from so many other brave folks who don't know what their ending will be. I think tonight as I write, I am writing with them in mind. 

In my opinion and experience pain is pain, blah-whatever. It stinks. But the mental struggle of, "will I live, how long will I live, do I keep going after years of chemo, chemo, chemo? Do I switch oncologists, am I with the right oncologist, what if I don't do this clinical trial or that?" Do I go to MD Anderson, do I go to Sloan Kettering,-what the flippin heck do I do?"

You are always questioning, and wondering and waiting. Waiting for those scan results, waiting for that report, waiting for that blood work, waiting in the hospital, waiting to get discharged, waiting for that call back from that doctor or nurse. 

And ya know-all of it boils down to is people want to live. I don't care if you're 30 or 60 or 80 (if you make it to 80 that is pretty darn awesome though).  The not knowing can be so difficult.

You are here now. Alive. Maybe you have cancer reading this or maybe you don't. But you are here now at this moment. Be aware of good things around, sometimes you must seek the good out. I encourage you my friends be with those you love. Visit those you love. Listen to those who speak to you-don't think about what you are going to say next-just listen. Be there for them. 



Sit with your kids, walk with your kids, listen to your kids. Be patient and glad you are alive and present to wash the shirt you know they only wore for 30 minutes and is now at the bottom of the smelly laundry. Be glad you are there when they are taking 20 minutes to put on a those socks and shoes, be happy when they are making you late. You are there! It's just life - late will always be there but you won't. Be overjoyed when they ask "can you play with me?" Put the phone/tablet whatever away. To hell with the I have to clean, I have to finish this, I'm to busy...and run toward them, because that question is the best request you can get and the answer is so easy. 

All good things,
Karen

Surviving Stage 4 Colon Cancer

On April 7th 2007 one month shy of my 32nd birthday I was told I had stage 4 colon cancer. Multiple big, fat tumors in my liver. That was almost 6 years ago. 

I have spent the better part of that 6 years with my mind on an automatic shutdown when I thought about even a month into my future. Couldn't see it, wouldn't see it, didn't want to see it-otherwise an all encompassing, consuming fear and terror would in-case me body, mind, spirit and soul. There I would freeze. My kids will grow up without me as their mother. They will experience heartache and anguish that will never fully heal.  I remember crying into the phone to my best friend Nicole, as I read the scan report in my car-all I could see were the words "multiple malignancies" all over the pages, and I said to her through snot-covered, blubbering sobs "Ethan will never know me." I thought of Sydney as a teenager-when a girl would need her mother the most and my soul would shatter. 

My diagnosis came and all of a sudden I noticed every funeral home, every cancer center, every commercial for cancer. Fran and I had these weirdo "we're kidding but we're not" conversations about should I be cremated and where will I be buried and you better make sure I look awesome in that casket. His burden as a father and husband only he can speak to during these difficult times, but I knew his burden was great. 

No one could say to me that I was going to get better and that it would be okay. They would want to, as I would if the situation was reversed, but the fact was that I was not okay and I probably wasn't going to get to "okay."

I remember many difficult conversations Dr. Moriarty had to have with us about me and the let's say "difficult" situation I was in. I would get bratty and try and make him say that I would make it to 50-60-90 years old. Forcing him into a corner to say "no Karen from my experience, probably not." 

I remember him telling me -as was his job and duty-just about 3 years ago or so "you might want to start thinking of having a different conversation with your kids." Me: (pretty deadpan and jaded at this point) about dying and stuff? Him: yeah

Now here we are my dear, loving supportive friends and family. Almost 6 years later. Thank you God I am still here. Thriving, joyful, and happy.

About 2 weeks ago I had my scans. Fran and I got the official lowdown at Dr. Moriarty's last week. 

Did you know there is beauty in the word unremarkable? Spleen-unremarkable, ovaries-unremarkable, kidneys-unremarkable, liver...unremarkable. I also find the words, boring, normal and ordinary very beautiful. For me they mean not only life, but a quiet, calm life.

My scan showed that again there is no visible sign of disease. It was very unexciting and very boring (a thing of beauty). I heard it from my doctors, I read it on the report, okay-breathing, breathing, breathing. 

There is a nodule on my lung that is very small (3mm). It hasn't shown up on the reports since 2009. But it was picked up during this scan. Did I freak-you better believe it. But Dr. Moriarty reassured us that it isn't new, it hasn't changed in 3 years and it is nothing to be concerned about. 

I am still considered to be in remission. I almost want to whisper that word, to write it very, very tiny. I feel like if I say it in a normal voice or write it loud and proud the cancer cells that still skulk  within me will hear and try to "get the gang" back together. 

But yet I am grateful. Grateful to the depths of my core. When Ethan calls out for me in the night it is never lost on me how lucky I am that I can run into his room, hold his hand and reassure him everything is okay. Ethan says "can you stay with me mommy?" "Yes, yes, yes-my dear sweet boy."It brings tears to my eyes almost every time. 

Or when Sydney is just so tired and had a long day and just wants to sit and hug and have a little cry, and I get to do that. I get to be her mommy and hug her and say "just need a bit of lovin and a bit of a cry Syd?" I will take that over any material thing in life. I just want, like all of us, life and to live. To raise my children and love them like a crazy person. 

I am here today. I have been shown great immeasurable mercy. As I say in almost every blog-I don't know how or why I am still here  but I am. I am learning to get rid of the survivors guilt. I am learning feeling guilty about living is an insult to our dear friends who are not here and produces and accomplishes nothing. 

I am forever indebted to all of you and your prayers, love, friendship and support. Let us all keep praying for each other because we all need it. I continue to pray for all of you, those who I know and those who I don't. May God's mercy continue, and be with all those still suffering and fighting to be well.

Much Love,
Karen

I Love NED

Yes I am still here!! I haven't had any new scans but I wanted people to know that I am still here and doing very well.  My CEA numbers are at a record low of 3.4 and seem to be holding steady. 

I will be having my scan done sometime in March which would bring us to 6 months from last September. Needless to say I am anxious to see the outcome. 

I have started back to work as a dental hygienist two days a week. Mentally I am loving it. Physically my body is not.
I am perplexed and still bewildered by how just working a couple of days a week gives my body a constant hum of muscle aches, sore throats, ear infections and extreme exhaustion. What the heck? 

Will I take this over being dead? Yes. Would I take this over being in treatment for cancer? Yes. But I am still kind of walking around, looking around this new world without full blown cancer, ignoring its whispers in my ear, and trying to live my life. 

I guess I am trying to see where I fit it in now. Not a complaint but an observation. I have been reading some survivorship blogs and it helps me realize I am not alone, or crazy and this is a very normal "journey" to be on. See I just never expected to get this far-and don't get me wrong-I am lovin it all day long.

But I think having cancer is kind of like being in prison (you think for your whole life) and then someone just lets you out. You go out into the regular world but you are a different person your body is a very different body. You don't know what you are supposed to be doing with yourself, or what you can do.

This is where I am at now. Just wondering if there are any other cancer survivors out there going through the same? I would love to hear from you.

I really hope this doesn't come off like I am complaining. Just communicating and sharing my thoughts. 

I am hoping too buy labeling my blog titles NED and such people who are looking for stories of hope will find my blog and know that the impossible can happen. I am stunned every day, every day without fail that I am here. At some part of my day WHAM! It hits me like getting hit in the head with a very large and heavy frying pan. "You are alive right now girl-holy crap!" Then of course I say "thank you God." Then I say "sexy chocolate!" from the movie "Coming to America" cause it's so hilarious.  True story.

I love you all my friends and family. Thank you for always supporting us and loving us. Please, lets keep praying for each other. We all need it. 

Much love,
Karen