#19989 03-23-2006 02:37 PM | Joined: Mar 2006 Posts: 7 Member | OP  Member
Joined: Mar 2006 Posts: 7 | Hi Lisa and Minniea,
Today was a not good ending to a not good week that began with the trip to the ER last Thursday. Jeff is officially beginning use of the PEG tomorrow and also starting to wear a pain patch. I am thinking that there is a bottle of zoloft somewhere with my name on it. I'm so angry at myself for becoming so stressed and tired that I caught the flu, letting down Jeff and the kids in the caretaker department, apparently adding the straw that broke the camel's back for my oldest who had her first anxiety attack in months last night. Feel like I have been stressed for 2 years now, starting with the date of Jeff's original diagnosis and continuing straight through to today.
It was very comforting to read your posts because it reminded me that this too shall pass. I can't wait for the day when I will have your perspective. You both sound like you are so strong.
American Idol is a huge hit in our house too, although unfortunately NOT with Jeff. The girls and I wouldn't miss a minute each week. (Lena is a big Chris fan! I like alot of the contestants this year.) Right now, it's one of the highlights of my week.
Anyway, thanks for your words of welcome and support. Tomorrow will be the halfway point for Jeff's treatments. One day at a time, I know we will get through this. | | |
#19990 03-23-2006 02:40 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | What good family stories. In the end it all boils down to Love and support-doesn't it  Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#19991 03-29-2006 06:28 AM | Joined: Mar 2006 Posts: 7 Member | | OP Member
Joined: Mar 2006 Posts: 7 | I don't know quite how to begin this post. I know that even though I only introduced myself a few days ago, I felt the connection and support that all of you provide instantaneously. And I know that no matter how I try to lead up to what I have to say, it will come as a shock. I don't meant to scare anyone and hope you won't be upset with me for writing this. Still, I feel that I want to tell you all what has happened and I know you will be supportive one more time and after that I will have to find some other place in cyberspace to find comfort in addition to the comfort and support I am, thankfully, getting from all of our friends and family.
This past weekend, Jeff passed away. Yes.
I can tell you all what happened, but I still don't really understand it. He had just been prescribed a pain patch that was to give him 72 hours relief at a time. He used it for the first Thursday night at about 8 p.m. He slept well all night and was still sleeping at about 8 am when the kids left for school.
Some time later I went to check on him and he didn't look right. I tried to rouse him and he didn't respond. I called 911 and tried to follow their instructions re: CPR. The paramedics came and took him to our local ER where he was put on a ventilator. They gave me little reason for hope as he was completely non-responsive. We transferred him to Johns Hopkins the next day but his condition never changed. The people at Hopkins were wonderful, as always, but there was nothing to be done. He passed away on Sunday. My kids and I had time to say goodbye although I don't think he heard us in a physical way, I like to think he heard us with his soul.
I was told that a CAT scan showed multiple strokes. I was told that it was not clear whether the strokes caused him to stop breathing or whether the fact tha the stopped breathing caused the strokes. I was told we would probably never know what happened.
Even as I write all this I feel completely disconnected from it. The phone rings and I'm sure that it's Jeff. Then I remember, but the facts have no meaning. LIke waht has happened does not fit into any frame of reference that I have. But once in a while, it has some meaning, and then I am crushingly sad.
Okay. I've told you and I know this is not a grief chat board so I'm not going to go on and on. I'm sure those exist somewhere. I am not going to continue to haunt you all. I want to wish all of you the best of luck and to say thank you for your support.
Hillary | | |
#19992 03-29-2006 06:49 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Oh my, Hillary, I have no words that can possibly do justice to what you are going through right now. Please do not apologize for posting about this here and please don't be afraid to come back here as you process this. I am so deeply sorry for your loss and will hold you and your children in my thoughts.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#19993 03-29-2006 07:27 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Oh Hillary, my heart goes out to you and the kids. Please do not feel you have to leave. We will try to help through this. My deepest sympathies to you and your children.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#19994 03-29-2006 09:04 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hillary, I do not have any words to comfort you during this horrible time. You and your children are in my thoughts and prayers...Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#19995 03-29-2006 09:23 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hilllary
The worst part of this forum is the sharing the grief that is so heartfelt.
We can only supply words, I for one would love to be there to give you a hug.
Within the past few months I have lost both of my parents and I know the pain that you all feeling, it numbs you to the core.
There is a saying that time heals, it doesn't really but time does take the razor sharp edges from the pain.
Please stay with us, we will try to help where we can..
You are more than welcome to e-mail me direct..
one day soon you will walk in the sun again
Love and Hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#19996 03-29-2006 10:47 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hillary
The strength it took to write your post commends you. I am so sorry for your loss.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#19997 03-29-2006 03:18 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hillary, honey, now is when you will need us the most. It's what we're here for so let us help you.
Love,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#19998 03-29-2006 05:33 PM | Joined: Feb 2006 Posts: 115 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2006 Posts: 115 | I'm so very sorry for your loss Hillary. Please look within this forum for comfort as there are so many people here that care and want to help you. I will be thinking and praying for you and your family.
Michele
Michele, caregiver to husband, Jesse, SCC diagnosed 1/5/06 unknown primary, lf neck mass >6 cm. Chemo (Cisplatin 2x; Carboplatin & Taxol 2x) & XRT radiation 39X ending 4/4/06. Rad neck dissection 8.5 hrs 4/13/06. 30 HBO treatments Fall 2006.
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