Thursday, February 27, 2014

It's All Good

Hello to all my family, friends, and loved ones. It has been such a long time.  As you all my or may not know, my scan schedule is now every six months. I had a full body scan in January and am here to fill you in.

There but for the grace of God go I. My scans were completely clean. Abdomen, chest, pelvis-unremarkable. No signs of metastatic disease. 

When I am blessed to get news like this it takes me time to absorb and contemplate. I never think my scans are going to be good simply because the last scans were. Cancer doesn't work that way. With stage 4 cancer it will never work that way. So it took me awhile to sit down, write and update everyone because I just need time to think, to believe it was true. So I thank you for your patience with me.

I am still seeing Dr. Moriarty every month and get my blood work done. My numbers are still good staying around 4 or 5, without any great leaps into higher numbers thank God.

I am still working two days a week, doing my dental hygiene thing. However my schedule has changed where I work on Mondays and Fridays and that has helped me physically regroup on those days off, as my immune system is crap and I have the stamina of a 90 year old. But that's very cool with me and I'll take it.

Life is great, but it can also be very difficult. I have been thinking so much about these opposing forces. Life is hard, it comes in so many forms, this hardness of life. The burdens we all carry. Be patient with one another because you may not know what heavy burden that person is dealing with that day. Be forgiving, it too, can be difficult, especially with those we love.
When we are on our deathbed, we may have the blessing, or sometimes the curse, of time before you pass.  You want to know you can be proud of your life. I think we all know our lives can never be based on our careers, or money, or things. They will always be based on how we loved and gave of ourselves, especially in the most difficult of circumstances. You can never take material things with you. What you had or didn't have in this life is pointless. But your love, or lack of love for others will remain.

I have thought I was going to die many times over these last years and I have lost so many friends. I am blessed with having some time now to live. I have been trying to live in the moment, in the day I am in, and trying to be concsious of loving, listening and being still. I fail many times. But I keep trying.
Life is such a gift my friends. Please don't sweat the small stuff, it's just not worth it.


Thank you all for your continued love and support. Let's keep praying for each other-we all need it.

Love to all,
Karen 




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











Monday, March 18, 2013

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

Wednesday, February 20, 2013

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

Friday, November 23, 2012

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.


Thursday, August 30, 2012

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


Saturday, May 5, 2012

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