A Difficult Year

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A Difficult Year

Postby Kathy » Tue Oct 31, 2017 6:38 pm

I haven't been posting online much. This has been a difficult year. On September 17, our 34 year old daughter Kim, passed away from liver failure due the overuse of Tylenol. Kim was a doctor of physical therapy working with severely disabled children. She was at work on Wednesday and was gone on Sunday. She was moved from a local hospital to Mt. Sinai in NYC for a liver transplant but she continued to get worse and she passed. She had had a brain injury in 2009 and worked hard to get back to work. She had some residual effects of the injury including headaches. If anything good comes from this, please be aware that too much Tylenol can kill. I have heard from 7 other people who know someone who has had liver damage or death. We donated Kim's eyes and bone so she will live on in others.

The year started off with my husband battling stage 3 pancreatic cancer. He did 6 months of chemo after whipple surgery and has had three clean scans. While George was in the hospital with an infection from his first infusion, I had a heart attack in his hospital room. I had gone to the hospital the previous Sunday with minor but continued chest discomfort. I was not sweating, no trouble breathing and sent home with a diagnosis of stress. The same thing happened on Thursday morning and I drove myself to the hospital. After sitting with my husband for 2 hours, the pain radiated to my back. They wheeled me down to the ER and the same people were on duty. They sort looked at me as a frequent flyer until the blood work came back indicating a heart attack. I had a catherization done that evening and had a stent put in because of a 100% blockage in the back of my heart. Four days in the hospital and I went home. Two parents with serious cancer and their 34 year old daughter is gone. It doesn't make sense.

On October 4, our 17 year old cat Nora had to be put down. I was very controlled until then. The dam broke and I was hysterical as I called the vet. By the time I got to the vet, I was okay. We made the right decision. She looked so frail on the table. We had Nora cremated and she and Kim will be buried together with my parents.

The next day, my husband was a victim of a massive layoff. He is 64 and most of the people were older. In order to get his severance, he had to sign a long document. He got them to agree to pay half our COBRA until he is 65 but it will still cost us $760 a month. He was with the company 29 years and was consistently one of the top performers. Maybe Kim did some magic up there as she always worried about her Dad's health. He only took 1 month off for the whipple surgery and worked between 8-12 hours a day during treatment. He worked out of the house and worked during infusions at MSK except for the last treatment when he took a nap.

I am trying to look at the bright side. My husband and I are doing well. I will be 9 YEARS out from stage 4 colorectal cancer thanks in part to Dr. Kemeny and the best caregiver ever, my husband. I have two sons and absolutely wonderful friends and family. We had 34 years with our beautiful daughter who impacted many lives in a positive way. And lots of good memories to cherish. She busted my chops after each surgery to get moving. After my first surgery, she signed us up for the Woman's More marathon in Central Park. She ran 13.1 miles and I walked 13.1 miles. She called it physical therapy---I called it parent abuse.

So everyone, please give your kids a BIG HUG!

A Big Hug to All,


P.S. A special thank you to CRguy who helped me with Nora's journe and for his caring friendship.
Stage 1- resection 9/ 05
Recurrence-2/ 2008 chemo/radiation 5 FU/oxi
APR surgery 7/ 2008- Found spread to liver-Margins not clean
chemo between surgeries
Liver resection and HAI pump-11/ 08 Chemo 6 months
NED 11/08

NED since 11/2008

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Re: A Difficult Year

Postby Ampes » Tue Oct 31, 2017 6:43 pm

I am so sorry about your daughter ! People have no idea how Tylenol can kill! You have definitely has a most horrible year !! Hugs to you ! Glad you and your husband are doing well!
DH diagnosed 9/17 57 yrs
CRC ascending 7x3 cm tumor
T3N0M0 stage 2A well differentiated MSS
LAR right hemicolectomy 10/11/17 clear margins

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Re: A Difficult Year

Postby Bev G » Tue Oct 31, 2017 7:13 pm

I'm really sorry for all you have been through. What a truly horrible year. I hope you and your husband continue to mend, and that there is an abundance of lovely memories of your beloved daughter and your kitty.

Warm best wishes to you.

58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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Re: A Difficult Year

Postby CRguy » Tue Oct 31, 2017 7:35 pm

Thank you so much for your sharing here, of what has been such a tragic and unbelievable series of challenges for your whole family.
After our emails, I did not want to post anything until you felt you were ready to be here again.

Your gift from Kim is truly amazing and yes ... she WILL live on in others, as well as in your hearts and lives ... forever.
Nora will be there with her, and I know you already know that my friend.

Thank you also for bringing the "tylenol" issue to the forefront. Unlike so many "toxic" meds WE talk about here, mostly chemo, we often forget that EVERY MEDICATION has that potential to do harm. CTalk members please share this info with friends and family, in Kim's memory.

My sincere condolences over your losses.
My most heartfelt, and strongest energies to you for only good things and positive Vibes moving forward.

your friend
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Re: A Difficult Year

Postby Robino1 » Tue Oct 31, 2017 8:22 pm

I am so very sorry for your losses. Giving the gift of your daughter to others is so amazing.

Even though over the counter meds are readily available, they are still medicines that can be damaging. I truly do not like taking anything medicinal wise but do know that there are times it is necessary, like chemo.

{{{ Hugs }}} I have no words that could possibly help you. I can only offer my arms, even if only in forum type.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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Re: A Difficult Year

Postby ams5796 » Tue Oct 31, 2017 8:29 pm

You have such a beautiful soul. I can tell that when I read your post. You have had the toughest of years. I hope you and your wonderful husband have many more great years together.

Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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Re: A Difficult Year

Postby bitchslapped » Tue Oct 31, 2017 9:07 pm

Sending my deepest sympathies to you & DH, for the loss of your precious daughter & to your sons for the loss of their sister. It is the reverse order of the way we parents think things should be. The further I read your story, the word "difficult" became an understatement. I admire your courage & strength. Not sure I could have made the right decision re: my pet given the circumstances. After an accident & crushed wrist, one of my sons was helped w/donated bone. Through you & your DH your daughter continues to make a difference.

Again, my deepest sympathy & Best Wishes to you, DH in health & healing.

DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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Re: A Difficult Year

Postby susie0915 » Tue Oct 31, 2017 9:29 pm

Wow. All I can say is God bless you. You are an inspiration to us all. After all you've been through you are able to be positive and thankful. I am so sorry about your daughter. Way too young. Losing a child is probably the hardest thing a parent can experience. Also losing a pet is never easy. They become loving members of our family. I am praying for you and your husband and may your future bring happiness and good health. Thank you for sharing your story.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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Re: A Difficult Year

Postby stu » Wed Nov 01, 2017 4:00 am

Sending my live to you in such a difficult time . Xxxxx
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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Location: Exeter, NH

Re: A Difficult Year

Postby James65 » Wed Nov 01, 2017 7:31 am

Hi Kathy,
There's the saying that God only sends us what we can handle, but that is BS. Life sometimes can be too much and we need some extra help to figure things out. Glad you are reaching out here for support and hope you are finding support from family, friends and a good therapist.

My thoughts are with you and I hope you can find a way to live with the pain that has come your way and that it eases.

Be well,
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.
Oops, another lung Met in upper left lobe on edge of previous resection scar 11/11/19.

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Re: A Difficult Year

Postby SweetC80 » Wed Nov 01, 2017 8:56 am

I'm so sorry for everything you have been through. My thoughts are with you during such a difficult time. Thank you for sharing.
My Mom
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum & Anus removed Perm Ileostomy Bag
9/17 Stage IVb 9cm Liver Met & 7mm Lung Nodule CEA 197
9/17 FOLFIRI CEA 160
10/17 Confirmed KRAS Pos CEA 210
11/17 Met growths Liver 10cm & Lung 8mm CEA 425
12/17 FOLFOX again Met growths Liver 13cm & Lung 1cm CEA 405
12/17 Xifaxan due to Hepatic Encephalopathy
12/17 New 2cm liver Met
1/18 CEA 992
2/8/18 Passed Peacefully

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Re: A Difficult Year

Postby cmrl » Wed Nov 01, 2017 10:51 am

My condolences to you and your family. I will never again refer to my year as bad!
It's amazing how much life throws at some people. I hope that new opportunities begin to open up for you to heal, and experience peace.
Resection of splenic flexure 7/24/13
T3N2BM0, Stage 3c,12/29 nodes
Folfox x12 9/13-3/14
CT scan 4/14, enlarged spleen, otherwise clear
CT 4/15, spleen WNL.
6/17 3 cm benign polyp at ileocecal valve, awaiting removal

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Re: A Difficult Year

Postby fumaros » Wed Nov 01, 2017 11:42 am

I am really sorry for all you have been through, that is enough pain and strain for a lifetime, and packed into a year. I really hope things get better for you and your family.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

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Re: A Difficult Year

Postby Maia » Wed Nov 01, 2017 5:41 pm

Kathy, I'm speechless reading what you have been through. I so wish I could ease your pain...
I'm giving you a long heartfelt hug, over the distance, and sending my love and my respect for your fortitude.

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Re: A Difficult Year

Postby orlar » Wed Nov 01, 2017 6:36 pm

I can't imagine the emotional pain your family has endured throughout the year. Positive thoughts for you and DH for good health going forward. Hopefully each passing day will brighten a little more as you remember the family fun times that have been shared.
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

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