The Past Year
mom_2_3
Member Posts: 953 Member
My journey began in March 2008 when I discovered (quite surprisingly!!) that I was pregnant with our third child. Having been practicing "family planning" I was quite shocked to discover that we were having another child. It's not like my husband and I were young and inexperienced. LOL. I had an uneventful pregnancy and was scheduled for a c-section on November 4, 2008. After our daughter was born and on her way to the nursery with my husband the attending surgeon was "feeling" around the abdominal area and felt a suspicious lymph node outside the colon. She called for an immediate biopsy by an oncological surgeon who came in and took 2 samples of the node. Being asymptomatic I would not have discovered the cancer until much later. My daughter is truly my "angel."
The next few days in the hospital were a blur of tears and fears as I googled CEA (my CEA was over 230), tumor markers, colon cancer and other terms. I would stay up each night until the wee hours as I could not sleep. I had a CT scan while still in for c-section recovery and between all the tests and so forth I was disappointed that I was unable to nurse our daughter. My husband had planned on going to a tax conference the week after our daughter's birth (I never like him to miss a golf opportunity) but of course he canceled his trip. On November 10 (my 39th birthday) I had a colonscopy and found that I had a 2 cm tumor. I also got the CT results from the GI doctor who confirmed that I had metastatic cancer with mets to my liver (5) that were bilobar in nature (in 3 different spots).
On November 12 I had my first appointment with a local oncologist who told me I was terminally ill and would have about 2 years. He said I was inoperable and would start me on a course of 12 FOLFOX infusions with a scan at 6 months. I had already scheduled an appointment with an oncologist at Memorial Sloan Kettering for November 17 so when I told him that he was a bit dismissive with his comments and said the oncologist from whom I would get another opinion was "that pump lady."
November 17, 2008 and I met my current oncologist at MSK. She told me that she could not give me a prognosis as everyone responds differently to treatments but that we would be aggressive in our approach. She said we would do 2 rounds (4 treatments) of FOLFOX with no Avastin and then scan at 2 months time. November 23 (Sunday) I went to a healing session which I describe on my home page). November 24 (Monday) I go to my first FOLFOX infusion. I told my husband at that infusion that in November 2009 we would go to the yearly tax conference and would celebrate my being NED.
I will skip the rest of the details as they are on my homepage but I had my liver resection, colon resection and HAI pump implantation on 2/20/09. I had a great recovery and felt fantastic a couple weeks after surgery. My liver surgeon and oncologist declared me NED on the day of surgery.
Last Monday I had my 9 month scan and I got the results today. This is my 4th NED scan and I am so grateful that my prayers and the prayers of my family have been answered. I know that at any time things could change and I could have a recurrence but for now I will live the next 3 months and not worry too much about the future. My husband always reminds me that all any of us ever have is today and I think about that a lot.
Between getting the scan last week and finding out the results today, however, my husband and I were busy. We spent 5 days in California at his tax conference and I thoroughly enjoyed the time we had there and I kept my promise to him that we would celebrate. We had a lot to celebrate including the 1 year birthday of our daughter, our 10th anniversary on 11/6, my husband's birthday on 11/8 and my own 40th birthday on 11/10. We like to call this time of year our own "festivus" and those familiar with Seinfeld will know that reference. To top it all off I won the longest drive contest (women) at the golf scramble!
I know that there have been some postings recently that have been challenging and I hesitated to post. I decided I would, however, as I remember that in the first days of my diagnosis I found so much hope on this board that there could be a long life after a Stage IV diagnosis. My wish is that my post can be helpful to someone else who is also on this journey.
My love to all,
Amy
The next few days in the hospital were a blur of tears and fears as I googled CEA (my CEA was over 230), tumor markers, colon cancer and other terms. I would stay up each night until the wee hours as I could not sleep. I had a CT scan while still in for c-section recovery and between all the tests and so forth I was disappointed that I was unable to nurse our daughter. My husband had planned on going to a tax conference the week after our daughter's birth (I never like him to miss a golf opportunity) but of course he canceled his trip. On November 10 (my 39th birthday) I had a colonscopy and found that I had a 2 cm tumor. I also got the CT results from the GI doctor who confirmed that I had metastatic cancer with mets to my liver (5) that were bilobar in nature (in 3 different spots).
On November 12 I had my first appointment with a local oncologist who told me I was terminally ill and would have about 2 years. He said I was inoperable and would start me on a course of 12 FOLFOX infusions with a scan at 6 months. I had already scheduled an appointment with an oncologist at Memorial Sloan Kettering for November 17 so when I told him that he was a bit dismissive with his comments and said the oncologist from whom I would get another opinion was "that pump lady."
November 17, 2008 and I met my current oncologist at MSK. She told me that she could not give me a prognosis as everyone responds differently to treatments but that we would be aggressive in our approach. She said we would do 2 rounds (4 treatments) of FOLFOX with no Avastin and then scan at 2 months time. November 23 (Sunday) I went to a healing session which I describe on my home page). November 24 (Monday) I go to my first FOLFOX infusion. I told my husband at that infusion that in November 2009 we would go to the yearly tax conference and would celebrate my being NED.
I will skip the rest of the details as they are on my homepage but I had my liver resection, colon resection and HAI pump implantation on 2/20/09. I had a great recovery and felt fantastic a couple weeks after surgery. My liver surgeon and oncologist declared me NED on the day of surgery.
Last Monday I had my 9 month scan and I got the results today. This is my 4th NED scan and I am so grateful that my prayers and the prayers of my family have been answered. I know that at any time things could change and I could have a recurrence but for now I will live the next 3 months and not worry too much about the future. My husband always reminds me that all any of us ever have is today and I think about that a lot.
Between getting the scan last week and finding out the results today, however, my husband and I were busy. We spent 5 days in California at his tax conference and I thoroughly enjoyed the time we had there and I kept my promise to him that we would celebrate. We had a lot to celebrate including the 1 year birthday of our daughter, our 10th anniversary on 11/6, my husband's birthday on 11/8 and my own 40th birthday on 11/10. We like to call this time of year our own "festivus" and those familiar with Seinfeld will know that reference. To top it all off I won the longest drive contest (women) at the golf scramble!
I know that there have been some postings recently that have been challenging and I hesitated to post. I decided I would, however, as I remember that in the first days of my diagnosis I found so much hope on this board that there could be a long life after a Stage IV diagnosis. My wish is that my post can be helpful to someone else who is also on this journey.
My love to all,
Amy
0
Comments
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4th NED
I like that NED news!! My wife and I also have a Angel. His name is Hunter and he is now 4 years old. My wife and I where quite shocked to discover that we were having another child. We too "Having been practicing family planning" We already had two kids. He is truly a blessing!!!
Life is funny sometimes
Brooks0 -
So happy for you and your family Amy!
Hi Amy,
Thank you for sharing your journey with us. You always have been such an encouragement to me.
Next time your in California, I want to meet you for lunch!! My treat.
Jennifer0 -
Congrats Amy!
Thanks for sharing your great news of continued NED! Your story is truly an inspiration to many.0 -
Great story
Amy,
Congrats on your one year anniversay. What a great story!!! Please continue to post your good news. It is very important for the newbies. And reaching such a mile stone is amazing. I remember my one year anniversary.
Give that baby an extra hug.
Maureen0 -
That wasMoesimo said:Great story
Amy,
Congrats on your one year anniversay. What a great story!!! Please continue to post your good news. It is very important for the newbies. And reaching such a mile stone is amazing. I remember my one year anniversary.
Give that baby an extra hug.
Maureen
so beautiful, it brought tears to my eyes, you are so happy and full of inspiration, what a wonderful story! I hope you have many more NED scans, you have given me alot of hope!thanks for this, I have 4 angels, and another one of course, but he's my biggest
Hugsss!
~Donna0 -
Congratulations!
Amy,
I would like to congratulate you on your NED status! You must be delighted you went for a second opinion. I want to thank you profusely for posting your story; I didn't know it & it is truly inspiring. I believe you will help many people with this post.0 -
Thank you
Thank you Amy for posting your story, it is inspirational and there is much rich advice as you tell about your journey.I am so glad that you did not take the first Dr's views as your only hope.
I have a new treasure also, he is my Grandson, he is six weeks old tomorrow. What is nice I can love him and let his parents do all the work!0 -
thank you for your story. Itthready said:Thank you
Thank you Amy for posting your story, it is inspirational and there is much rich advice as you tell about your journey.I am so glad that you did not take the first Dr's views as your only hope.
I have a new treasure also, he is my Grandson, he is six weeks old tomorrow. What is nice I can love him and let his parents do all the work!
thank you for your story. It gives me hope. I too have stage IV cc with mets to the liver and have just started treatment in sept of 09. Your story renews faith that I can beat this thing someday Thanks Deb0 -
Wow
What a great story - thank you for sharing that awesome news.
Kim0 -
Amy, what a beautiful story!
And such a little angel you have!!! You have been thru alot, but cheers to your c-section guy that was willing to 'feel around' a bit after delivery....I think he/she deserves a BIG box of Godiva chocolate!!!!
You have been thru heck, but have lived to talk about it! What a great example you are to this board!!!
I live in California....you should have called....lol!
Hugs, Kathi0 -
Thank you for sharing
What a journey you have had to NED. Congrats, I feel inspired by the positiveness of your story.0 -
Hi dear Amy,your story is
Hi dear Amy,your story is amazing.Congratulations on being NED.Please stay NED for now and forever.Thank you for sharing your story with us.Your story tells us how important it is to be your own advocate and to seek second opinion.Thank you.Take care.0 -
Thank You Amy......Fight for my love said:Hi dear Amy,your story is
Hi dear Amy,your story is amazing.Congratulations on being NED.Please stay NED for now and forever.Thank you for sharing your story with us.Your story tells us how important it is to be your own advocate and to seek second opinion.Thank you.Take care.
As someone said above, I think you did, that the newbies need to hear this as well as some oldies too. Its always good to talk about freedom from this mess. It is essential to others to hear it so never feel bad about being NED. It gives all of us hope for a cure and for normalcy back....again, good for you Amy, it is most certainly something to be happy about....Buzzard0
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