My Scotty Boy has flown away ....

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so-scared
Posts: 1059
Joined: Wed Jun 01, 2011 12:53 pm

My Scotty Boy has flown away ....

Postby so-scared » Mon May 26, 2014 5:03 pm

Image

I am so sorry to have left all of you hanging. I have come here to tell you the news many times and just struggled to type it. I started a few drafts and had to walk away. There are so many magical things that have happened, along with the bad, that I wanted to write it in a flowing eloquent way but I can't quite compose something that is eloquent at this time. So, I am going to give it to you in tidbits. I am sharing this with you but I am also writing it here so that I remember things.

My sweet, kind, loving, handsome husband, Scott, flew away to heaven Friday morning May 23rd, 13 short hours after entering the residential hospice place. Scott liked to be early for everything and I guess going to heaven was no exception. I had prayed that he would make it to the Confirmation and get a letter written for the kids and then have a swift exit. I guess that my prayer was answered. Scott died free of pain and surrounded by as much love as is humanly possible. I am so sad that he is gone but I am so happy that it was very quick and peaceful. I found that helping Scott die with dignity and grace was one of the most loving acts that I could have done. I am honored to have been the one to love this man to the very end.

My tidbits of things that fell into place and were magical/touching to me in randonm order ....

The home hospice nurse that strongly suggested residential hospice spent a lot of time with me just talking as we waited 6 hours to get things in place for Scott to be transported by ambulance to a residential hospice. As we sat out by our pool, I told her that I had so wanted a recording of Scott's voice before he left me. She said some things would not get done and I emphasized how sad I was because it would NEVER be done. She came in the house and went to Scott. She introduced herself and said that the first thing that they were going to do was to make a quick recording for his wife. He responded to her, as he always did to me, and said that he loved me and he will do it a little later. She said, nope, we are doing it right now. Scott was starting to slip into a semi coma at this point. She told my son to grab my phone and turn the recorder on, which he did. She then told Scott to tell me that he loved me ... he did. Not only that but he kept adding things and ended it with "I miss you". :( I finally got the strength to listen to that recording this morning. His voice is weak and tired but the message is absolutely priceless. I had also told this nurse that the kids had letters that they had written to him. She said that she would leave us alone and go do paperwork and to get in there and read them. The kids did and it was a magical tear filled family bonding time like no other. This nurse gave me her personal cell phone number as we had bonded. After listening to my message from Scott, I called her to let her know that I will be forever grateful to her. If it was not for her, I would have never gotten that recording. She told me how touched she was by my family and wants to have a drink sometime. I told her that I just needed to let her know what a difference she had made and that she was a Godsend that day. She thanked me for the call as she wonders sometimes if she does the right thing for families ... no doubt that she did all the right things for us and I am so glad that I listened to her about taking Scott out of the home to die.

The nurses on the night we got to the residential hospice were nice but I just didn't feel "it" with them. There was a shift change at 8:00 am. The day nurse walked in and within 3 seconds I felt like we were kindred spirits. It is something that I can not explain but there was an immediate connection with her. She asked me what I had in mind for breakfast for myself and my kids. I told her that I hadn't even thought of it. She ordered a cart of drinks, snacks, and fruit for us. She also came wheeling in with a toaster and a loaf of bread. She had this energy about her that just felt right to me. A little more than two hours after meeting Glenda, the nurse, she helped my family and I say good-bye to the love of my life and I can not think of anyone that I would have rather had next to me during that difficult time. She asked if she could read a book to Scott during his final moments. The book was absolutely beautiful and just perfect. I am so thankful that Scott hung on until Glenda got there as it would have been a totally different experience with the night nurses.

Shortly before Scott passed away his local oncologist called my cell. I answered and told her that it wouldn't be long now. She actually told me that she loved me. What doctor does that? This one does, and you can feel that she means it! She is a gem and I feel so lucky that we switched to her 6 months into Scott's diagnosis.

In the morning, before Scott died, I just needed to get away for a few. I was very upset. I took the elevator down. When I got off a young (20 something) little black girl was there. She looked at me and saw that I was a wreck. She said "Oh honey, let me give you a hug" At this point I did not know if she was a worker, visitor, or what. She embraced me and it was magical. I know that I have never before felt the feeling I had hugging this perfect stranger. I just hugged her and cried. She asked me if it was my mom or dad (the hospice is a wing of a large nursing home) and I told her that it was my husband. She said "Oh dear God" and broke immediately into the most beautiful, passionate, heartfelt prayer that I have ever heard. I couldn't write a prayer like that if I had a week to do it and this was just a spontaneous thing out of her. I can not tell you one thing that she said but I know how the words and passion made me feel. It is the most moving thing that I have ever experienced. When we stepped back from one another she walked me to the front, got me a tissue, told me that everything was going to be okay, I thanked her, and we went our separate ways. At this point, I still had no idea what this girl was ... worker, visitor, or what. I took my time outside and when I came back I walked down to the elevator. There she was cleaning the floor. The girl who had just made such an impact and helped me so much was the 20 something cleaning lady! I looked at her and asked her name. She said it was Ajala. I told her that her name was as beautiful as she was and that she was truly an angel here on earth. She smiled, told me that she loved me and that she promises everything will be okay. We shared another quick hug, I thanked her, and we went our separate ways. The chaplain from the hospice called this morning and I shared this story with him and told him that someone had to find this girl and let her know what a differece she had made in a complete strangers life. He said he was going to find her as soon as he got to work today. I am going to find her too once things are settled here. She has to know what she did for me in my darkest time.

About a week or so ago I asked one of my friends to look on pintrest for some ideas of momentos etc that I could do before Scott died. We all thought that we had a couple of weeks to do something, but we were wrong. This friend texted me while I was at the hospice and asked if she could do anything. I reminded her of the pintrest thing and if she could find something and help me do it before it was too late. She showed up with a stepping stone. Scotts hands hurt so bad that we couldn't touch them while he was dying. They seemed to get that pain under control but I didn't want to mess with them just in case. After he died, my friend and the nurse, Glenda, mixed up the cement and pressed Scott's hand into it. They asked if it looked okay. It didn't, it wasn't deep enough into the cement. Scott's friend happened to be there when Scott passed and told us that he does this with cement every day as he does patios etc and people do thier handprints in the cement all of the time. So, I told him to take over. He had a way of wiggling Scott's hand into the cement that worked way better. He then did all of our thumbprints around Scott's hand. He also took a lot of time and accented things and wrote stuff on the stone. What are the chances of him being there when Scott died and having the knowledge that we needed to properly do this very special thing? So cool.

The night that Scott was admitted I told them that everything happened so fast that we didn't get a chance to do momentos etc and asked if they had someone to help with that or give ideas. They came back with an idea for a tree that had fingerprints for leaves. In the morning, the social worker went to Micheal's and got heavy paper and every color ink pad that they had. After Scott, died the kids gently pressed each of Scott's fingers into the different ink pads and got his prints on paper for us to make the tree. It was so special. When we were done making a mess of his hands we decided to leave his rainbow colored fingers so he could make the funeral home guys smile. I asked the funeral home diretor when I met with him what he thought of Scott's rainbow fingers and he said that they made him smile. Two missions accomplished! :wink:

After my Scotty Boy flew away to heaven, I was sitting outside and Sloan Kettering called my cell. It was Sandra, Dr K's nurse. She was checking on Scott and was absolutely blown away that he had died. For those who know Sandra, she is an interesting individual but I will tell you that she was genuinely upset. She spent a lot of time talking to me about things ... and she cried. I don't know why I was surprised at that but I was. Touched again.

Our four boys have decided that they want to carry their dad to his final resting place. So, our boys and Scott's two best friends will be the pall bearers for Scott.

My Scott loved to go to our church on Sundays. I am going to take him to church on Sunday one last time. We are having his service next Sunday with a private burial on Monday for close friends and family. We have decided to Scottify the burial. He was a die hard Wisconsin Badger/Packer fan so we are asking everyone to wear Badger/Packer attire to the burial. Scott would love that! We are also releasing balloons in the team colors. We are serving root beer floats too ... his all time favorite! I think that he would approve.

Scott had made plans with the neighbors to go to the drive in last night. Scott just loved it there. I kept the date. As much as I want to hole up, I have to get my kids out. It was hard to be somewhere that he loved. As I was standing there, it dawned on me that the one man in the world that thought I was truly beautiful and who loved me dearly as I did him ... is gone. That hit like a ton of bricks standing there. May God give me strength. I am so grateful to have had the chance to love and be loved in such a beautiful way. The world will never be the same ....

I miss Scott already and I dread when the true reality of the situation hits. It has been a long journey but there have been bright spots, even right up to the bitter end. I want to thank all of you for all of your unwaivering support over these three years. It is so nice to have a place to go where others just get it. This is the only place that I share this part of our life. I saw that Bev had started a thread for me offering support earlier today. I told my kids about it and shared that I am truly amazed at how much one can feel for another when just knowing them through a screen. It's a beautiful thing.

DeAnn
Last edited by so-scared on Mon May 26, 2014 5:14 pm, edited 2 times in total.
DH 51 yo
dx 5/16/11 stg 4 RC
mets both lobes liver & lung
6/11 chem/rad
FOLFOX 9-12/11
12/11 TME/liver resect/rfa (15 tumors)
more Folfox w/Avastin
5/12 innumerable mets liver
Folfox/Avas FAIL
9/12 FOLFIRI/Erb FAIL
HAI pump 12/12
Had to leave 5/23/14

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ANDRETEXAS
Posts: 632
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: My Scotty Boy has flown away ....

Postby ANDRETEXAS » Mon May 26, 2014 5:08 pm

DeAnn -

My prayers to you and your family. I know this is a difficult time, but wanted to let you know we will do all we can to help you now and in the future.

Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

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tchan8888
Posts: 208
Joined: Mon Mar 25, 2013 8:41 pm
Location: San Francisco Bay Area

Re: My Scotty Boy has flown away ....

Postby tchan8888 » Mon May 26, 2014 5:09 pm

Prayers and blessings for you and your family. May Scott rest in assurance of your love.

Blessings,

Tom
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: My Scotty Boy has flown away ....

Postby Maia » Mon May 26, 2014 5:13 pm

(((((DeAnn))))))
So much love surrounding you.

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elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: My Scotty Boy has flown away ....

Postby elise » Mon May 26, 2014 5:32 pm

DeAnn,

I can feel the love you have your Scott. I have no doubt he felt it too.

(((HUGS)))

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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Icesk8tr
Posts: 1068
Joined: Sat Apr 30, 2011 11:37 am

Re: My Scotty Boy has flown away ....

Postby Icesk8tr » Mon May 26, 2014 5:42 pm

Dear DeAnn,
I am so sorry that this horrible disease has taken Scott. I will continue to pray for you and your sons for strength during this difficult time. The words you wrote were beautiful and very touching. You can feel the love come through very clearly.

Hugs,
Christine
Stage IV CC 2010

mymom
Posts: 1278
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: My Scotty Boy has flown away ....

Postby mymom » Mon May 26, 2014 5:47 pm

I am so sorry to hear this. I am glad it was peaceful. Thank you for sharing with us. I think the tree of fingerprints is a wonderful idea. My prayers are with you and your family.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED

Val*pal
Posts: 860
Joined: Sun Feb 10, 2013 1:24 pm
Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: My Scotty Boy has flown away ....

Postby Val*pal » Mon May 26, 2014 6:07 pm

Deann, thank you for the post. I was wondering about how Scott was doing. It sounds as though his passing was a good one.

I think my husband Danny will be joining Scott pretty soon. I pray that his passing can be as peaceful.

Many prayers for you and your family.

Val
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

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Jack&KatiesMommy
Posts: 605
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: My Scotty Boy has flown away ....

Postby Jack&KatiesMommy » Mon May 26, 2014 6:10 pm

Oh DeAnn
That was more beautiful than you will ever know. I love you and Scott and your whole family. I know he is with God right now......
I wish I could hug you and Scott.
Cynthia
Last edited by Jack&KatiesMommy on Mon May 26, 2014 8:33 pm, edited 1 time in total.
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: My Scotty Boy has flown away ....

Postby dianne052506 » Mon May 26, 2014 6:20 pm

DeAnn,

What a beautiful story, and truly, eloquent writing. Thank you for sharing both the story of your love for each other, as well as the small miracles that helped you these last terrible days.
May light perpetual shine upon Scott.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

ams5796
Posts: 2297
Joined: Fri Feb 06, 2009 10:07 am

Re: My Scotty Boy has flown away ....

Postby ams5796 » Mon May 26, 2014 6:36 pm

DeAnn

I am so sorry that this happened. I wish you and your boys peace and love going forward.



Ann
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

awags
Posts: 25
Joined: Mon Apr 28, 2014 4:00 pm

Re: My Scotty Boy has flown away ....

Postby awags » Mon May 26, 2014 6:40 pm

DeAnn,
I am so sorry to read that you lost your dear husband, but I am so happy you experienced so many tender mercies during his final moments. My heart is with you and your family, and I pray for peace and comfort for you all.

Take Care,
Ashley
Wife to 29 year old husband
12/2013 - Stage 4 - lungs and lymph nodes
01/14 - Folfox
5/14 - Folfiri + Avastin
https://www.facebook.com/teamryanstrong

Laurettas
Posts: 1606
Joined: Tue Jun 21, 2011 9:49 pm

Re: My Scotty Boy has flown away ....

Postby Laurettas » Mon May 26, 2014 6:41 pm

DeAnn, thank you so much for sharing your beautiful story with us. What wonderful memories you will have as a family of your last hours with Scott. That is such a gift. As time passes, if you need to talk, I will be here.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

Nixma
Posts: 88
Joined: Fri Feb 21, 2014 3:05 pm
Location: CNY

Re: My Scotty Boy has flown away ....

Postby Nixma » Mon May 26, 2014 6:58 pm

I am so sorry. My thoughts and prayers continue to you and your family. Your explanations of all those things is beautiful. I am happy you were able to record his voice and get prints. How comforting those will be . Blessings and hugs

Teri
42 F when diagnosed July 13
July 2013 Large tumor removed vie R hemi colectomy
no chemo
January 14 CEA doubles
Pet Lites up
Now Lymph nodes near pancreas cancerous
Stage 4 mcrc
Folfox 3/18/14
Hysterectomy 7/15/14
Resume Folfox 8/27/14

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raym
Posts: 1263
Joined: Sat Apr 16, 2011 11:08 am
Location: South Central PA

Re: My Scotty Boy has flown away ....

Postby raym » Mon May 26, 2014 6:59 pm

Thank your for sharing your experience. Wow it all happened so fast. Wishing you strength and peace.
3/11 IIIC +/FOLFOX
4/12 HIPEC
6/12 Chmo/Rad
9/12 XELIRI+Avast/Zltra
9/13 Plvic Absc,stpd chemo
11/13 Tumr rmvd frm Lap Port incis
12/13 Xeloda
1/14 Cardiac Issue no Xeloda/5FU
3/14 Irinotecan
6/14 Stopped chemo
8/14 Clin Trial
9/14 Infectn - Stpd Trial


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