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Stage IV NED, 4.5 years

mom_2_3's picture
mom_2_3
Posts: 937
Joined: Nov 2008

In August 2008 my son turned 5 years old. At the time we had a 2 1/2 year old daughter and I was pregnant with our third, a girl. During the actual birth of that third child in November 2008 it was discovered that I had Stage IV colon cancer with multiple liver mets (5) on both sides of my liver, largest being 5 cm. I went through chemo, had surgery, had some more chemo, had a cardiac arrest and then had my last chemo treatment in November 2009. 

On August 2 my son turned 10 years old. TEN YEARS OLD!! I can't believe that almost 5 years have passed and that I just had my 4 1/2 year NED scan.  Next Monday that little baby girl who turned out to be my angel starts her last year of pre-school.  She will be 5 (FIVE) in November.
 
I had the CT done a few weeks ago and am happy to report that Dr. K at MSK gave me the good news that I was still in remission. Even better, I met a friend at MSK on my appointment day. My friend had his HAI pump implanted the same week my liver resection took place. His liver was covered with tumors and his doctor in Ohio told him that going to NYC would be a mistake, that he would die there, that he should just go home and die with his children and wife by his side. My friend didn't listen to his advice and when I saw him I was so happy to see how healthy and happy he looked. He was there getting scan results (4 years remission since his liver resection) and was planning on getting his HAI pump removed. So it was a good day, a great day. Next scan is in 24 weeks and when/if I make that a clean scan I will schedule removal of my HAI pump.

Five years ago I didn't dare think of how my son would look at 10. I would cry when catalogs came in the mail with little girl models at 6 and 7 and 8 and 9. I thought how I would never see my little girls at that age. It broke my heart. I still don't take it for granted that I will see my children grow to adulthood but I have more hope and I wanted to share that with the board. When I first came here I read every story about Stage IV patients and would write their names in my notebook, especially those that had lived far past their doctors' predictions. I read that list at night before bed and memorized the list of names. I still read that list sometimes and by posting my news I do so to share that hope with others here that are earlier on in their journey.

I don't think about cancer every single day like I used to. Some days I get in bed and realize I hadn't thought of cancer that whole day. It is amazing to me as at one point it was all I could think about. But, what has not left me since my diagnosis is a true and complete appreciation of every single day. Rain? Humid and hot? Whatever, don't care. I just drove my car through some water and needed a new engine. Didn't phase me or my husband a bit. My husband leaves his socks and sweaty t-shirts on the floor. I pick them up happily and hug them tight before they get the Tide treatment. Someone doesn't talk to me or snubs me? Who cares? It's not my business what anyone thinks of me. I know people disagree about whether cancer has brought anything positive to their lives but I can say that for me, waking up each day with a smile on my face is what I have chosen to take away from this experience.

Love and hugs to all,
Amy

 
cross-posted at colonclub
YoVita's picture
YoVita
Posts: 545
Joined: Mar 2010

Thank you for taking the time from your busy life to share your good news.  I remember your posts when I first joined - partly because of your avatar - great looking kids!  I'm so happy you've reached this stage and have been able to see your children grow.  Your attitude is wonderful - we can all learn from your philosophy.  Thank you, again, and please check in when you can.  Cheers - Vita 

Trubrit's picture
Trubrit
Posts: 1488
Joined: Jan 2013

What a wonderful, uplifting post. 

Congratulations on so many years NED, and seeing your darling little ones (GREAT avatar) growing up. 

We all know the fear that can be so overwhelming when first diagnosed, and the constant thoughts of cancer and what it might mean, as we go through the various treatments. What a blessing to be able to have days pass by when cancer doesn't dominate your thoughts. I can't wait for that day too.

May you contine in health and happiness, watching your children grow.  May you and your husband contnue to live life to its fullest.

Thank you so much for this wonderful post. 

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Thank you for sharing. Your timing was perfect for me...

Hugs, Judy

DD3's picture
DD3
Posts: 36
Joined: May 2013

Thanks so much for you post.  As a caregiver I couldn't have asked for a better story at a better time. 

Annabelle41415's picture
Annabelle41415
Posts: 4275
Joined: Feb 2009

Thank you for the update and the good news.  Glad that you are moving on with life.

Kim

LindaK.
Posts: 322
Joined: Apr 2013

What a beautiful post.  Thank you, thank you, thank you!

Gavin63
Posts: 98
Joined: Aug 2013

Hello Amy,

Thank you for the comprehensive post. It's really encourraging to all victims of this deadly decease. I was diagnosed stage III Rectal in early July. I too have a son & 2 daughters like you & they are going to be 12 years soon. I am now getting ready for my next line of treatment (Chemo / Radiation) after resection of my rectum in end of July.

Congrats on your journey of NED for 4.5 years & pray that you continue to be NED to see the graduation of your 3 lovely kids. Thats the goal that I have set in my life fighting cancer & I want to make it. 

Good luck & thanks once again for your lovely post.

Gavin     

tanstaafl's picture
tanstaafl
Posts: 970
Joined: Oct 2010

Thanks for sharing your story, Amy.  Your friend is clear demonstration that inquisitive and motivated patients can choose better doctors and treatments.  On this board are the tools to find your way.

marbleotis's picture
marbleotis
Posts: 492
Joined: Mar 2012

This is truely joyful to read!

Buddy2013
Posts: 7
Joined: Nov 2013

Amy,

Thank you for your inspirational post.  

 

I have liver resection surgery in 2 weeks, just after Thanksgiving.  i've heard good things about the HAI pump, although it is not offered where I live.  How long after your liver resection did they implant your pump?

Buddy

 

angelsbaby's picture
angelsbaby
Posts: 1161
Joined: May 2008

happy for u and your family

 

michelle

BigMike's picture
BigMike
Posts: 17
Joined: Oct 2013

Thanks Amy,

it's storys like yours that give us all hope.  I know exactly what you mean about appreciating all the little things, even being uncomfortable is such a blessing, I actually enjoy doing the dishes and cleaning the kitchen, so much to find pleasure in that was taken for granted before.

janderson1964's picture
janderson1964
Posts: 1644
Joined: Oct 2011

I don't know how I missed this story when it was posted but sure glad I got the pleasure of reading it now. Thank you for posting such a detailed inspirational story about you and your friend.

mom_2_3's picture
mom_2_3
Posts: 937
Joined: Nov 2008

Thank you for the good wishes and comments. Last Monday I went into NYC for bloodwork and to get glycerol in my HAI pump (every 8 weeks so pump does not run dry and ensures I can use it in the future if needed).

It was an emotional day.  It was my littlest one's birthday and as I drove into the city all I could think about was the circumstances of her birth.  My ob/gyn had birthed my daughter and my husband went with her as they did apgar and weight.  The attending surgeon, an experienced gyn and head of the residents had scrubbed in with my doctor.  She was feeling with her fingers beneath the uterus and felt a lymph node.  They called in an oncology surgeon who came in and did took a biopsy and then 45 minutes later took another sample.  We were so stressed.  They did bloodwork and my CEA came back that night in the high 200's.  I spent the next 4 nights in the hospital googling like crazy and I knew that the CT scan would come back with metastatic cancer.  6 days later (on my birthday) I had a colonoscopy and the doctor gave me the results of that and my scan.  5 liver tumors.  Happy Birthday.  4 days later I met an oncogist who told me I was not operable and that I could expect 22-24 months.  I looked at my newborn sleeping on my lap and couldn't breathe.  We had already scheduled a second opinion with Dr. Nancy Kemeny at MSK.  We told him and he said good luck, that she was a dinosaur and had out-dated methods (HAI).

We kept that appointment with her and the rest is history.

I thought of all that my Monday appointment.  I thought of how my little girl had not been planned, how her conception came to be despite birth control and a marital bed that had two toddlers sleeping in it with us.  My husband would tease me that I had a boyfriend because he couldn't explain my pregnancy.  But we both believe in angels and know that one lives with us here on Earth.

I pray that all here walk among angels,

Amy

jen2012
Posts: 1208
Joined: Aug 2012

Great story Amy - thanks for sharing it.  Enjoy your angels.

Lovekitties's picture
Lovekitties
Posts: 2952
Joined: Jan 2010

The sharing of positive outcomes is so very important to those of any stage on the cancer path.  Thank you for not only sharing your success butr also your positive outlook on life today.

Enjoying every day we have and letting the small stuff be a non-issue is the way to live.

May your future continue to be bright and healthful.

Give those 3 children an extra hug for me.  They have a super mom.

Hugs to you too,

Marie who loves kitties

traci43's picture
traci43
Posts: 442
Joined: Jul 2007

Thank you for sharing your story.  You give hope to other stage IV survivors like myself.  My your scans continue to be clear and your life long and happy.  Traci

sharpy102's picture
sharpy102
Posts: 339
Joined: Apr 2009

Today it was definitely worth checking the site. Two good news at a time, you and Pete. So cool!!! And I hope you'll see your youngest daughter turn 25 (if not more...cannot go below 25 though!). :) I am happy to hear how you fought against this "parasite" and showed it that "you're not taking me anywhere, cancer!" Good job!!! I wish you many many happy years with your family that will become great memories when you'll be in your late 80s! :)

MadeInMichigan
Posts: 35
Joined: Nov 2012

Gives me hope for my mom, as grim as things have been... thank you a lot for sharing, and good luck to you and everybody else dealing with this [nonstop expletives] disease.

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

So great to hear from You.    My grandaughter was 5 months old when you were diagnosed, I remember vividally your story.  Keep the faith, you are doing great!  

tko683
Posts: 257
Joined: Aug 2011

I love your story, thanks for sharing!  I am so happy anytime I hear a positive Stage 4 story.  I wish they used the HAI pump in NC but unfortunately they do not.  It seems to work so well for many. Enjoy those kids!  Hugs to you!  Teri

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

 

Congrats! Keep up the good work. You're an inspiration to all that frequent this board...

Buster

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