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10 Years already...

mom_2_3
Posts: 964
Joined: Nov 2008

Officially 10 years NED as of today.  I wanted to post my story for those new to the board.  When I was first diagnosed all I wanted to read were survival stories.  I knew that it didn't necessarily mean I would survive long-term but the possibility and knowing that others had was so important to me.   I would say that now I hardly think of cancer and it will be days before the thought crosses my mind.  But, not a day goes by that I don't give thanks and gratitude for the life I am so blessed to live...

Here is the story I posted on my FB wall letting friends and family know about my diagnosis in the hope that I would bring awareness to the disease.  We didn't tell our children about my illness until this past year so not many of my friends know that I had been ill.

This community was so important to during that first year of illness.  I hope that this post gives you hope if you are looking for it, as I was so many years ago....

Amy

 

"It was during Katie’s caesarean birth 10 years ago today that we first discovered I had colon cancer. It wasn’t until 6 days later on my own birthday that we learned that my cancer had metastasized and I had 5 tumors across my liver. American Cancer Society survival rates for my Stage IV cancer were 8% at 5 years and during an initial consult with a local oncologist I was told that I would probably have 22-24 months to live. Nothing in my life before or since compares to the devastation I felt in that moment when I heard that prognosis. 

My husband’s cousin, a gastroenterologist, quickly secured an appointment for me with a different doctor, a renowned oncologist at Memorial Sloan Kettering. This doctor specialized in a special chemotherapy pump called an Hepatic Arterial Infusion pump and her method was achieving longer than average survival rates. She told me that she would treat me and that hopefully I would respond to traditional chemotherapy and be able to have this HAI pump implanted in the future. Four days before Thanksgiving 2008 I started my first systemic (traditional chemo) treatment. 

Systemic chemotherapy (especially the platinum-based drug that I was receiving) was no picnic. I suffered the usual side effects from the treatment but asked my doctor to give me the maximum possible dose. After 4 bi-weekly treatments a CT scan confirmed that the chemotherapy was working and my liver tumors were responding to the treatment and I would be eligible for surgery.

Nine days later on February 20, 2009 during a 9-hour surgery I had 12 inches of my colon, 42 lymph nodes, 40% of my liver and my gallbladder removed. Additionally, I had an HAI pump implanted into my abdomen. I had 30 staples up and down my mid-section and a side incision where they had placed my pump. Before the surgery I had been marked by an ostomy nurse where the doctor would place a colostomy if necessitated by surgery. The first memory I have after waking up is feeling my mid-section to find out if I had, in fact, had a colostomy placed. I was relieved to discover that I did not as it would be one less thing I would have to deal with during my recovery.

After my wounds healed I started up my chemotherapy treatments again, alternating between systemic chemo and chemo injections into my HAI pump. This pump, routed to the hepatic artery, allowed for a very concentrated dosage of chemo to profuse the entirety of my liver (which re-generated after 6 weeks). During my 7th chemo treatment I experienced severe anaphylaxis and had cardiac arrest. Electric paddles and 2 doses of epinephrine revived me and I found myself in a cardiac unit for 2 days as doctors monitored my heart to determine whether I had permanent cardiac damage (I did not).

Finally, on November 2, 2009, almost one year to the date of my diagnosis, I completed my last chemotherapy treatment. Throughout the past nine years since then life has been full of blood tests, CT scans, and follow-up MRIs and ultrasounds on suspicious spots here and there. But, through the grace of God and by the hands of three amazing doctors, I have remained in remission from my disease. I have been truly blessed. On October 2, 2018 I finally had my HAI pump removed and heard my surgeon tell me that he considered me cured."

danker
Posts: 1191
Joined: Apr 2012

I was dxed in Dec. '09.  Went down the bumpy road June of 2010,  Been NED ever since!  So it will soon be 9 years for me, by my 87th birthday.  Aren;t we the lucky ones?

Trubrit's picture
Trubrit
Posts: 4894
Joined: Jan 2013

What a wonderful testament to the fact that Stage IV can be beat.  Sure, it may be hell of a bumpy ride, but life after the C, is a joy. 

I think you deserve our special little celebratory Dancing Men - well, you deserve ten, but I'll stick to a couple.

Thank you so very much for coming back and posting your joyous news.

Tru

beaumontdave's picture
beaumontdave
Posts: 1005
Joined: Aug 2013

It's an important story to have here and a great result, congratulations!!......................................................Dave

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

     Sending you hugs and best wishes for a cancer free future, Ron.

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Good to see you still here. Hope you are well. 

Kazenmax's picture
Kazenmax
Posts: 361
Joined: Feb 2016

Thank you, thank you, thank you for this wonderful report. It’s so encouraging. I hope for your continued health as I do for everyone on this board.

cheers

k

Diane_K's picture
Diane_K
Posts: 49
Joined: Jan 2019

I love to hear survival stories especially with stage 4 people.  Thanks for giving us hope!

myAZmountain
Posts: 279
Joined: Apr 2018

As stage 4 mysef I am thrilled to read your story and how you have been free from cancer for so many years! It gives me hope. Thank you for sharing!!

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

Thank you so much for posting.  That is wonderful news and I'm so glad to hear that you are still NED.  Your story needed to be shared with the newbies on the board that feel like they are another statistic and realize there is true hope and a future.  Come back here anytime and share your great news.

Kim

Joan M's picture
Joan M
Posts: 383
Joined: Oct 2016

I'm so happy to hear your story of survival!  You are definitely blessed by God to be free of cancer after a stage IV diagnosis!  

I also found this site looking for those who had survived this awful disease. It's always nice to find more survivors and brings hope to those of us still in the trenches battling the chemo and surgeries.

I've had some heart issues from chemo too, but luckily, no heart attack yet.  

Thanks for sharing hope you never have to deal with cancer again.

God Bless you!

Joan

 

k8's picture
k8
Posts: 30
Joined: Oct 2018

Story. Really gives hope and inspiration to others going through this ordeal in their own lives. Very happy for you and your family and for not giving up. It could not been easy for you. Thank you for sharing.

Kate

Twinzma
Posts: 216
Joined: Jan 2018

This is exactly what I needed to read today. My husband is stage 4 and I try not to think of the statistics but there are days, like today, I just can't help but think of the odds for survival are not good. It means so much to me, to hear it is possible to overcome the impossible. You brightened my spirits tremendously, thank you! And most importantly congratulations!!! 

marybrang
Posts: 7
Joined: Jan 2017

I am superstitious so worry I am jinxing myself here but I also feel I owe a debt to this community.  While I was sick, the comments posted by others comforted me, answered some of my questions and generally helped me through my ordeal.  That said, I myself never posted while I was sick -- I was too frightened. 

Anyway, like many, I felt completely shocked the day of my colonoscopy when my doctor appeared at my bedside with a tragic look on his face and told me I had a tumor that required surgery. I was 50 at the time and after a good cry at a friend's house, I lurched into action as we all must do-- arranging insurance, making appointments.  The diagnosis: Stage 3B colon cancer. I had surgery first (removed 12 inches or so of my colon plus lymph nodes) and then 6 months of 5-Fu chemo with Oxy.  Chemo was not flawless -- had to take a pause near the end I was so weak.  Recovery was difficult at first and included one "accident" (didn't make it to the toilet on time) but, as promised by my surgeon, I discovered over time my "new normal," a live-able normal.   

I also want to say that I am a single woman who had the support of my wonderful family and friends and likely would never have made it through without them.  Caregivers are the brave ones, not us. 

Now it is almost 9 years later.  I had neuropathy and chemo brain but I believe both have passed. My memory is no longer the best. I'd say it's simply hard to figure out what is "aging" and what might be after-effects from chemo.  Most doctors would say I am healthy for my age (though I am out of breath sometimes when I think I shouldn't be).  The point is, I am able to work a difficult job and do pretty much everything I want though every now and then I have what I call a "weird digestion day."   Not bad at all for having had cancer... !  

So, to anyone reading this who may be afraid and in the middle of their darkest days: Take heart, rely on your family and friends, and just get throught this however you can.  The real and wonderful challenge comes when the treatment ends: What will you do with this new life you've been given?  

Kazenmax's picture
Kazenmax
Posts: 361
Joined: Feb 2016

Thank you for posting such an encouraging story. May you be cancer free the rest of your life!

 

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

That is wonderful Mary - thank you for posting this.  It's great that you had such a great support system.  So glad that you came here to post your suvivorship.  It means a lot to people on this board.

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Yay! I love it wqhen people share their stories of survival, beating the odds, or even just living well with it. NED for all of us!!

Jan

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