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

Still N.E.D.

Happy Thanksgiving one day late! I hope everyone enjoyed the day with family and friends.

I should have posted this back at the end of September but, again, that procrastination problem I'm working on...

I had my scans toward the end of September and with all humility and joy I can tell you that they were clean. My internventional radiologist/SIR-sphere-inserter-doctor, doctor Nosher who has been reading all of my scans since my SIR-sphere procedure 2 years ago said he couldn't find "a single solitary thing." The report stated that no new lesions, or previous existing lesions were detected.

Speechless. I really don't know what to even write. There are no words to describe the gratitude for getting another chance at life. There are no words to adequately thank all those who have been praying their guts out for me, those who know me and haven't even met me.

What can I ever say to Dr. Moriarty, and all my doctors and nurses who have helped save my life?

To my family, friends, my children, my husband? These feelings of gratitude, humility and joy I have not been able to express with words, I hope I can express them, if God's mercy stays with me, in how I live the rest of my life.

Thank you for your continued prayers and love my friends.

All Great Things,
Karen

I want to dedicate my clean, healthy scans in honor of my father-in-law Frank Shanahan who past away this past October 4th. You are deeply loved, and deeply missed. Still waters run deep.

Summer Update

Hello to all! It has been a long time since I posted, I know. But things have really been that quiet. They have been ordinary, mundane, nothin-doin. And that my friends, is a gift.

I'll go straight to the logistics. My CEA continues to hover around 4.5. It has been that way, for at least 10 months, I think. I haven't had any scans since my last one in March. Dr. Moriarty wanted to wait 6 months (first time in 5 years!) for the next one, as long as my blood work/CEA was normal. I begrudgingly agreed. I knew it was a positive thing, but I also found it very unnerving to wait so long. I almost felt like I was being a bit arrogant. Like "hey look at me I'm so way cool and better so I am totally waiting 6 months man!" But yet I waited and now September is upon us and wheels are in motion for setting up my scan appointment soon. 
I have also been seeing Dr. Moriarty once a month still to get my port flushed and blood work done and to just meet and see how my health is faring. 

In anniversary news, as of August 10th 2012, it has been 2 years since my last chemotherapy treatment. I have not had any chemotherapy treatment or Erbitux. Hopefully, if all goes well with my scans, October 26th of this year, it will have been 2 years since my SIR-spheres procedure, and my last procedure full stop.

Okay so this whole 5 year deal? The fact that I am alive, and thriving, and to this date, no clinically detectable cancer to speak of? Miracle, my dear friends. And I do not use this word lightly. Just two months ago, this past June, another friend of mine battling the same stage 4 cancer as I, passed away, she had to leave behind her 7 year old boy and her husband. She was 33 years old. Out of respect for her desire for privacy I won't give her name. I also don't speak of her for sympathy on my part. I speak of my lovely friend, because that should also be me, or she should also be me yes? Do you see?

Every morning when I wake up-BOOM-an amazing gift. But wait, it gets better, more amazing gifts to follow! Then I have two healthy happy children that I have the privilege of caring for and raising, and a husband who works so hard, and loves me BOOM! WAIT!! It gets even better!! I am not sick, I feel great, I can walk on my own two feet, take care of my self. BOOM! Make my kids something that resembles breakfast, sit and watch cartoons with them (with my coffee of course)- BOOM, BOOM, KABOOM! Pure, pure, pure gift, upon gift upon gift of life. And that's just my morning my friends.

Every day, every single day, I marvel and I am deeply grateful that I am alive. Because I really shouldn't be. That will never escape me, nor leave me. If it ever does I should be slapped...hard. 

Each day that I open my eyes, is a great day. I don't think I am really able to even say "I had a bad day today." What? No way.  It may be a stressful day. It may be a sad day. It may be a difficult day. But I am in that day present and accounted for. It is a most precious gift that I don't take for granted. When we are out with the kids, or the kids and I are outside blowing bubbles or something, I am thinking and feeling that I cannot believe I am getting to do this! That emotion pours in, resonates and flows through my whole body and I am deeply, deeply grateful and very humbled. This happens every day with me.

I know tomorrow is not promised. I knew about it before, but now I have lived it and I am still living it. Cancer is always lurking back there. I try not to pay it much mind, but yes with scan time, comes the "scanxiety" but to think about that now would be wasting time, not living in the present, not focusing on being able to write to all you amazing people who have prayed, supported, loved and cheered my family on these last 5 years. I selfishly ask please don't stop praying!

I have had the privilege of speaking with a lot of different people out there who most specifically have stage 4 colon cancer. I know I don't have a lot going on, but I will continue with the blog because people need to know that there is hope. There is a place in all of the dark world of cancer where people can get to wellness. I don't just mean myself. There are many others out there. If there is anyone new to this blog there is a great calendar out there called the Colondar. It has 12 different stage 4 colon cancer survivors featured on it. They are all young people diagnosed with colon cancer at a very young age such as myself.  On the cover is a woman who is an 11year stage 4 cc survivor! Go to www.colonclub.com and the calendar is featured there. It is an amazing source of hope. If you know of someone who may find this helpful please pass it along.

Once my scans are done and all is known I will post the info. Please pray all is clear. Thank you ahead of time.

Thank you all again for your unfailing love and support to our family. We thank you for it and are very grateful to be so blessed. Let's continue to pray for one another, and live fully in the present.

Much love,
Karen

All Good Things

Hello my dear friends and family! I know, it's been over 4 months-whatsa matta wit me? Well ironically, the answer is nothing!!
Like I have mentioned in the past if things are going well then I usually don't have much to report. So here I sit writing to you all feeling very lucky indeed.

I'll start by saying that I met with Dr. Moriarty at the end of February for my monthly check-up and bloodwork. I was sitting in my kitchen waiting to hear from Kathy with my CEA numbers and instead I heard from Dr. Moriarty. Now as you all know I love Dr. Moriarty, but when your oncologist calls you at home-it usually ain't so good. So as my stomach was churning I asked Dr. M "hi...why are you calling me?" (insert nervous laugh here)

Dr. M. said that my CEA was slightly elevated and though he wasn't overly worried or "freaked out" (he tries to use my language) he didn't like the trend. Now mind you it had only gone up a point in a half or so. But when my tumors "act-up" the CEA is usually consistent with that.  The last time my CEA started to rise is when my cancer resurfaced after the liver resection.

I was due for scans in about 3 weeks. Waiting that long for scans and results in cancer-time is about...hmm...lets say a year! Add on possibility of new cancer whatever...that's 2 years!! For the first 5 seconds I was like "okay no biggie, it didn't go up that much." That lasted for all of 5 seconds, then I fell to pieces.

For the next 3 weeks I was a mess. I stopped working out, watched a lot of t.v. and sat and stared a lot.  I don't like to admit it but I was pretty depressed.

It's not that I am scared of, or worried about treatment. For me, with stage 4 cancer, I just skip over all that and think, "okay is this where I die now?" I hate to be morbid, but this is a cancer blog, and it's how my mind works. That's what rots about cancer. I think especially stage 3 or 4. There isn't anything that anyone can give you or treat you with that can garauntee you get better (and I say this with all the love in my heart, but please don't suggest alternative medicine or diets to me...please). You can do this and that and just cross your fingers and pray it works, and if it doesn't work and your tumors aren't under control you die. So when I say I just skip to the end, that's what I mean. And that what makes your head spin, and takes you into dark places in your mind that your are REALLY tired of going to.

Then I'm thinking, well maybe I just need more chemo or whatever, and guess what? Then I get to watch my children and husband suffer while I walk around like a warmed over corpse. Yippeee!! (heavy on the sarcasm here) Like I said-wasn't feeling so "positive."

So I had my scans on Monday the 20th of March and saw Dr. Moriarty that Wednesday.  The report had not come in yet. That means no report-no info-no knowledge this equals Karen having a mental breakdown.  I thought my whole body was going to crack in half. As if I was a statue and someone took a chisel at the top of my head, slammed it down and I split right down the middle.

Fortunatley I had the CD with the scan on it so Dr. Moriarty was able to review it with Fran and I. He sat with us for at least 20-30 minutes going over it with us. He felt that barring anything the interventional radiologist Dr. Nosher saw, he didn't see anything outstanding.

In addition, my CEA numbers also went back down. Okay, starting to breathe. The top of my shoulders which had been fused with stress to the bottom of my jawbone for the last 3 weeks started to loosen up a bit.  For me though, I NEEDED THAT REPORT!!! I know that anyone with cancer reading this knows where I am coming from.  That Friday, the lovely Kathy called me. I was in the food store.

Kathy said the they had the report and on the report it was stated "no evidence of disease." You see, that was in the actual report. Kathy told me she had to read it over a few times to make sure that's what it said before she called me. I was shaking like a leaf and my knees felt like jelly.

Now I have been lucky for months now. My scans for the past year have been very good. The reports have stated, "continuous improvement," "no new growth." That in itself is incredible news.
But for it to say no evidence of disease??? It's winning a billion dollars (tax free) in the lottery except exponentially far better.

Now after reading the last post in December one might say "yes well you were already NED right?" But the last report stated in general terms things look good. But there wasn't any mention that there was no evidence of disease. That has never been in a report of mine-not ever.

To put it in even greater perspective, I have not had chemo since August of 2010. I have not had a procedure done or treatment of any kind since October of 2010. For nothing to grow in that time...to me, its astounding.  I am lucky, blessed, and cannot even begin to articulate the depths of my gratitude.

Every day I am grateful. I am grateful each morning when I get up. I am grateful when the laundry room is overflowing with laundry, I am grateful when one of the kids is giving a passionate speech about how homework is mean for kids to do and they will never ever get it done. I am grateful for cleaning the bathroom toilets. I am grateful  for every mundane, ordinary thing in life, because guess what, I am alive to live it.

You see I am here. Everyday that I get to wake up and be present in my life is a gift. I am not planning to travel the world, climb Mount Everest, or jump out of a plane. I just want a beautiful, sweet, ordinary life growing up and growing old with my family. I am very blessed to be given that chance right now. I don't know how long the cancer will stay away, a few months, a few years, who knows? But right now I have been given a rare gift in the stage 4 cancer world of being quasi well.

I do have survivor guilt and getting-well guilt for sure. And at times it gives me pause, and I debate wether to publish the next blog post.  But that's really just me thinking about what other people would think of me and has nothing to do with helping and informing people, which is supposed to be the point of this blog. So I digress...

Deeply, deeply I thank you for all the prayers, years and years have past, and people still come up to me with the greatest compassion in their eyes and tell me that they are still praying for me. Woah. Blows me away and I humbly thank you . I do continue to pray for all those suffering and all those who I know and don't know who pray for me, so hopefully, the power of many...

Again thank you everyone. Thank you. Lets continue to pray for each other. We all need Jesus in our lives. I don't think it means we always feel like we want to. But for myself when I try to do it on my own, I end up in a muddled mess.

Thank you for all the support for reading this blog. Take care of your health. Get your mammograms, get your colonosopies, if its scary-so what. That just means its something that's scary. It's just an emotion and won't hurt you. But not doing these tests can also kill you. Live in the present, prevent illness where you can, and pray.

Much love to you all,
Karen

Finally an Update

Hello my friends. I apologize for the great lack of updating. But in my case if I'm not updating it's because things are going well and there isn't much to report cancer-wise.

Things have been going great, I am thankful and happy to say. I had my scans mid-November and Fran and I met with Dr. Moriarty the Wednesday before Thanksgiving. Since my previous 3 scans, and blood work had been good, I picked off a tiny little chunk out of the I-think-this-scan-will-be-okay-too mountain that has previously been completely untouched.

Dr. Moriarty came in and told us that the scans were good, "phew." He said that as a matter of fact Dr. Nosher who did my SIR-spheres procedure in October of 2010 and has also been doing my scans up until this point, felt that I could wait another 6 months before my next one. "Well" I said, that's a bit nuts, we're not waiting that long. And anyway that's for people who don't have cancer or whatever." To which Dr. Moriarty said in his always very calm demeanor "Well, Karen I can't really say that I can classify you as someone who clinically has any signs of cancer."

"Say, say, say what now!?"

So then I start crying and wringing my fingers so hard I think I am going to tear them straight off. Fran and I were both totally bewildered and I said to Dr. Moriarty "what the heck are you talking about?"

So in a nutshell the report from the PET/CT scan said that it didn't pick up any metabolic activity from any tumor (from the PET) and from CT didn't show any malignancies either. So basically "they couldn't see nothin."

What does this all mean? I didn't update the blog immediately because even though this news is better than miraculously great, it has taken me awhile to process. I think I am still processing and digesting all of this. When Dr. Moriarty was explaining all of this to us, I was truthfully just as shocked as I was when I was told I had cancer.

Right now the doctors don't see any visible signs of cancer in me or on my person. I guess I can be classified as N.E.D. that means (no evidence of disease). That's a sweet phrase and though this is an understatement I am deeply, deeply grateful. The most I was hoping for last year was a long break from chemo. Maybe like 6 months.
So this is a crazy miracle and I am all over it. I am so very grateful to be alive.

For people wondering, (because I know I was, and riddled Dr. Moriarty with a barrage of question my own self), the cancer can come back at any time.

But life right now is good, and right now is sweet. I am trying to just sit back and take into account all that I have been given, and wonder why I have been given it. Then I try not to wonder why and just enjoy my life. But cancer has taken 3 very dear friends of ours this year who went to the ends of the earth to be rid of cancer, heck just to have the damn tumors shrunk. They were young, strong, determined and loved life. They had children, had people who loved them deeply and are missing them so much now. Julia, Jessica, and Adam. Please pray for them and their families during this time of year that is so hard. Especially for their young children. It is because of these amazing people, and friends who are still battling, falling down and picking themselves back up over and over and over again, that I can't help but wonder about where I am at.

Thank you, every single one of you for your prayers, for lighting candles, for your emails, letters, messages and loving support.

Let's keep praying for each other.

Much Love,
Karen

Wow...

Hello my friends. Well here it is. I had my 3 month scan done on August 11th. Saw my life-saving Dr. Moriarty on August 16th.

God blows you away with the bad in life, and then blows you away with the incredibly great!! My scan stated that in regards to my liver tumor it showed "continued improvement," and "minimal activity," oh and then there is my favorite "no new evidence of disease." Uh, yuh-huh, that's what I said too. But after being wound up tighter than anything, convinced the my lucky streak was due to be over, it took a day or two for the news to actually sink in.

This has been the best summer of my life, and after this past Tuesday, the happiest I have EVER been in my life. Since Tuesday I keep thinking back, back and back to when I met Dr. Moriarty. My body was dying then. I have thought about this a lot. I didn't realize it too much at the time, but over the last few years, how I had been internally physically feeling, how sick I was, yes, my body was dying. That is why right now at this minute I feel sheer, pure, happiness.

I have been off of chemo for a solid year (which adds to this miracle). I can feel life, taste life, like you can feel the moisture in the air on a humid day. When I go for walks lately sometimes I just stop, let the sun hit me and breathe in nice and deep, because I can, and nothing hurts, or aches, or burns.

Why I am still here, I do not know. I am genuinely stupefied. Why my body has responded to treatment well, yet no so well in my dear friends who have passed, I do not know. But I know I am very lucky, very grateful, and very humbled.

I have stage 4 colon cancer. I welcome the miracle along with the absurdity of being cured. That's easy to want, effortless even, but hard to come by. But I revel even in this, that still having cancer, I can live my life unimpeded. Striving to be a better person today than I was yesterday, because each day I wake up I feel like God swoops down and hands me this crystal clear, beautiful present. I open it each morning and inside is today. I say to Him "thank you God for the gift of life today."

Deeply, deeply I thank you for all your prayers and support, love and friendship. I am so grateful to you all. And to Dr. Moriarty, my coach, my healer, my friend thank you for getting me so very far. I am forever indebted to you.

Much love,
Karen