Monday, August 17, 2015

Stage 4 Colon Cancer-Just Keep Swimming!

Summer hello's to all my family and friends! I will get right to it.

I had my scans about a month ago and once again I held my breath and waited, planned out my chemo schedule and how I would handle it all, planned how we'd tell the kids. Because with every scan, with every blood test I expect the worst. Somehow, for reasons I will never understand God gives me the best.

Perfectly clean scans. Nothing. Dead calcified tumors still dead and calcified. No growth-no change.

Every other organ and scanned part of my body is normal. Unremarkable-as they say in the reports. 
I love that word. 

I have been feeling good, but still have to take things kind of easy. I have, finally, well almost 90% accepted that I can't do the things I used to do at a physical level. If I want to exercise-even if it's just a 2 mile walk I try and make sure I don't have to much to do the next day because my body will be physically drained. My memory is crap-the other day someone asked for my phone number and for 10 embarrassing seconds could not remember it.  Thankfully it was over the phone and she couldn't see my blushing. 

It's all good and I'm not complaining. I am grateful to be alive but I am just speaking to where I am now. I'll take it any day of the week. 

We have been having a great summer, the kids are 9 and 11 now and thriving. I am so grateful to be by their sides and helping them and guiding (I hope!) them as they grow into this new tween/adolescent phase of their lives. It makes my heart rejoice to have made it with them this far in their lives. It feels like I've made it to another marker with each milestone in they come across and experience with each birthday they have. 

There isn't much I can say that I haven't already said. I am very far from perfect or very learned and I will never claim to be. But one thing I do know. Each day we are on this earth is a gift. I don't even ask for God's blessing for tomorrow because I don't even know if that day will come. Be with each other, listen to one another, love and forgive. If you are alone and isolated in this life seek out others who are who are in the same boat, or who are having a difficult time. Give them your love and company and you will find that healing love and companionship returned to you. There is always someone who has it worse. Always. Seek them out and have compassion. That is what I have learned. Because life is hard, we all need love, and tomorrow may not come. 

Thank you for your continued support and prayers. It means so much.

I also want to encourage anyone who wants to, please feel free to contact me with any questions or anything you want to talk about in relating to cancer. It never bothers me.

Much love to everyone,

Tuesday, December 2, 2014

Still Using The "R" Word

Warmest of hello's to my family and friends. I hope all reading this are well, peaceful and happy.

Here I am-December 2014. Though it can change tomorrow or even today, I am still in remission. Three years-still in remission. 
Cancer cells are still flowing around trying to find a place to take hold, which in my weaker moments terrifies me, but in most moments I can brush it off. 

In November of 2011 Dr. Moriarty told me there isn't any clinical evidence of cancer. I think it took me just this past year to be comfortable saying that to people, though maybe it has taken me this long to believe it.  And I am grateful. Most of the time I feel like I am living in a fantasy world. Like I am playing "life," like a child would play house. When I was diagnosed life became mind-numbingly difficult, everything was hard. I was living in a state of constant fear for my life, and no one could tell me it was going to be okay. That is sobering my friends. But today is different. All of that aforementioned stress, fear and anguish is gone.

Can you imagine? I just get to go to work, take care of my kids, go shopping, la, la, la. It's a breeze.

I am grateful for everyday I can wake up and put me feet on the floor. I am grateful that my children and husband, my family, are alive and healthy. 

Everything else. Everything else icing on the cake. 

Life is hard. Life is full of devastation and heartache. But if you stop and pause and take your time to live in the present, you can always find the greatness and kindness of life. Or at the very least find something to make you smile and bring you a moments peace, or healing. If you take the time to be still, be alive where you are, you can find it. 

I cannot ever thank everyone enough, for all the prayers and support through-out these 7 and a half years. I will always be indebted to all of you. Thank you from the bottom of my heart. 

I continue to be monitored and have my blood checked every 4-6 weeks and my scans will be coming up in a month or so. If you don't hear from me - all is good.

I love you all and thank you for everything. I will continue to try and live my life gratefully in honor of all of you and in honor of all those no longer with us.

God Bless.

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,

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,

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,

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,

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,

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.