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Another Year in the Books

Posted: Sat Jul 02, 2016 9:46 am
by mom_2_3
Had my yearly CT scan and an Ultrasound to watch my thyroid on this past Monday. Checked the MSK portal all week for the reports to post and they finally did post last night while my husband and I were enjoying dinner and some wine. After 7 years and 4 months, I remain in remission from my Stage IV diagnosis (liver involvement). We truly had something to toast to.

I feel incredibly blessed to be here after being told in 2008 that I had 22-24 months to live. I am so grateful for so many things---the support of my husband, for my amazing sister who helped every week with housekeeping and childcare during the period of acute illness, for a wonderful mother-in-law that would come stay with us for weeks on end to help us, for my husband being employed by a company that was so amazingly supportive of us during our time of need (the CEO of my husband's Fortune 500 company still asks him all the time how I am doing) and most importantly, for a medical team that gave us hope and options.

I think back about the comments made to me about my doctor, Dr. Nancy Kemeny as we evaluated treatment options. Other doctors told me that she was a dinosaur, not very nice, out-dated, that the HAI pump was an ancient technology, that it was a waste of time and energy to get into NYC to see her, and etc. Well that amazing doctor (and of course my crack surgeons Dr. Philip Paty and Dr. Michael D'Angelica) saved my life. I am tearing up thinking about the debt of gratitude I owe that team. I have only positive things to say about Memorial Sloan-Kettering and all the staff I have interacted with since 2009. If you are in need of a second opinion I highly urge to to consider MSK as an option.

I am still 3 years away from 10 which is my magic number and the point at which I will finally let my children know about my diagnosis. I want to make sure they are extra vigilant in watching out for their own health as they move into their teen years. I still have my HAI pump in although I haven't had it accessed now for at least 2 years. Hoping to get around to making the appointment to have it removed sometime this fall.

That little girl that saved my life will be 8 in November. Best word to describe her is "spitfire" as she has a way with her words and actions that has me giggling just about every day.

Thoughts and wishes for all those here,
Amy

Re: Another Year in the Books

Posted: Sat Jul 02, 2016 11:57 am
by zx10guy
Amy,

Congratulations on reaching this milestone especially with the dire picture your medical team initially provided you.

As an aside, the comment you posted about how other doctors were being critical about Dr. K really struck a nerve with me. To be upfront, I have no affiliation with Dr. K. But it's amazing the medical system churns out these types of so called doctors. I got to see the best and worst of the medical profession from where they all originate in college through my interactions as a first responder to being a patient. The system to create doctors is severely broken and I can get into a separate diatribe about the lack of emphasis on actual patient care mechanics versus just punching in and out for a job. As a first responder, I've been a witness to the same callous attitude by an ER trauma physician towards one of my patients we brought in. But I've been given hope that there are good doctors out there when I was diagnosed with cancer. The liver surgeon who postponed his vacation plans during Christmas so he could be in the operating room to personally biopsy my liver and if needed do a resection right then before my CRC surgeon would do a resection to the primary in my descending colon.

Also of the comment about not being nice. Well, in the end, it's actions which speak louder than words. I think people really don't care if their doctors give them a warm fuzzy if in the end this doctor can cure you of any illness you have. My CRC surgeon doesn't have the best bedside manner either. But so far it seems that he did his job well in getting all the cancer out of me and he was responsible for pulling in that liver surgeon I mentioned above.

Sorry about the tangent. But again congratulations.

Re: Another Year in the Books

Posted: Sat Jul 02, 2016 9:12 pm
by DarknessEmbraced
Congratulations! Wonderful news! :D

Re: Another Year in the Books

Posted: Sat Jul 02, 2016 10:26 pm
by Nik Colon
Congrats! Great to hear!

Re: Another Year in the Books

Posted: Sun Jul 03, 2016 8:29 am
by radnyc
Great news Amy! I'm right behind you. Almost 6 years.

Al

Re: Another Year in the Books

Posted: Sun Jul 03, 2016 8:53 am
by HopeForJesse
radnyc wrote:Great news Amy! I'm right behind you. Almost 6 years.

Al
Big congrats and thanks for the much needed inspiration today. HAI scheduled for my DH in 9 days!!

Re: Another Year in the Books

Posted: Sun Jul 03, 2016 9:03 am
by HopeForJesse
mom_2_3 wrote:Had my yearly CT scan and an Ultrasound to watch my thyroid on this past Monday. Checked the MSK portal all week for the reports to post and they finally did post last night while my husband and I were enjoying dinner and some wine. After 7 years and 4 months, I remain in remission from my Stage IV diagnosis (liver involvement). We truly had something to toast to

I think back about the comments made to me about my doctor, Dr. Nancy Kemeny as we evaluated treatment options. Other doctors told me that she was a dinosaur, not very nice, out-dated, that the HAI pump was an ancient technology, that it was a waste of time and energy to get into NYC to see her, and etc. Well that amazing doctor (and of course my crack surgeons Dr. Philip Paty and Dr. Michael D'Angelica) saved my life. I am tearing up thinking about the debt of gratitude I owe that team. I have only positive things to say about Memorial Sloan-Kettering and all the staff I have interacted with since 2009. If you are in need of a second opinion I highly urge to to consider MSK as an option.


Amy


Amy,
CONGRATULATIONS- So nice to hear your story!
I so needed this inspiration today as my husband got up for breakfast and is already back in bed 30 minutes later due to the chemo fatigue and emotional exhaustion of the ileostomy. Glad to have a reminder that this is temporary.

We were told the same things by the local docs that the technology is out dated blah,blah, blah. As we anxiously await the HAI surgery (and reversal) in 9 days, I am eternally grateful that Dr K is still working and helping countless others like us who so desperately needed the 2nd opinion and hope.

I hope to be able to quote this post in 7 years+ with a similar toast story.
Thanks again for the good news and God Bless.
Mary

Re: Another Year in the Books

Posted: Sun Jul 03, 2016 1:21 pm
by lauragb
Amazing and so hopeful for so many. Congratulations!!

Laura

Re: Another Year in the Books

Posted: Sun Jul 03, 2016 1:31 pm
by Annemiek
Wauw! Just wauw! Tremendous!
Congrats and many happy returns!

Annemiek

Re: Another Year in the Books

Posted: Sun Jul 03, 2016 1:40 pm
by Annemiek
May I ask what your children know and din't know, since you will be telling them about your diagnosis lateron? They must know how ill you have been over the years?

Thanks
Annemiek

Re: Another Year in the Books

Posted: Mon Jul 18, 2016 5:40 pm
by mom_2_3
Annemiek,

My children were 5, 3 and newborn when I was diagnosed. My husband and I made the decision to not tell the older children about my diagnosis. My sister and mother-in-law covered for me during my absences and we told them I had eye surgery for when I was in the hospital for my big surgery. All subsequent appointments were about my "eyes" and they could well believe that given I have poor eyesight (although correctable). I did lose some hair but the kids never asked about it and if I was ill during treatments I would "barrel" my way through in order to provide a semblance of normalcy. They never seemed to notice anything quite honestly other than my son feeling my abdomen and asking me why it was so "hard" (my HAI pump). Basically they didn't know anything other than mommy had "bad eyes" and I certainly played that card in order to get them to eat more carrots...

I know many people believe in 100% honesty with their children but I believe that everyone should do what feels best for their children and their environments. My children were a bit anxious as it was and I remembered growing up under constant stress that my father would succumb at an early age to lung cancer (which he in fact did although I was out of college at the time). I didn't want my kids to hear the word "cancer" and worry about me. I feel like when I hit 10 years it will be safer to tell them about what happened and also encourage them to look after their own health and bowel habits to ensure that they are not affected by colon cancer.