Monday, August 26, 2013

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











3 comments:

Anonymous said...

Thank you for posting your story. It gives me hope. I am a now Stage for CC survivor.
Diagnosed in March 2011 with stage 3c colon cancer. Reoccurred 9months later. Also, diagnosed with kidney cancer a month later. Its been a wild ride! I have done FOLFOX and FOLFRI and Erbitux maintenance for several months until a recent break given. Thanks for sharing your story. :)
BP

md amirul islam said...
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Anonymous said...

Good luck Karen! I check your blog frequently, have since its inception. John