#43933 10-04-2004 02:08 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) |  "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Glad you're taking care of yourself also, Nicki. All the better for Tom to see that you are positive, glowing and obviously coping. You are doing so well, best wishes to you all with love from Helen 
RHTonsil SCC Stage IV tx completed May 03
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#43934 10-04-2004 04:17 PM | Joined: Jun 2004 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2004 Posts: 72 | Yes, Nicki, anxiety can produce feelings of numbness or emptiness. I think there are just times when the body says, "I've had enough, I need a time-out from feeling." You are under a lot of stress, as you know!, and this stress can produce an overload of anxiety, which in turn can produce the numbness. Good news is that you appear to be doing all the right things to cope with this: letting other people help you & Tom, enjoying life's small pleasures (a beautiful fall day) and taking time to take care of yourself (e.g., soaking in the Jacuzzi, cooking something special). Take good care of yourself so you can take care of Tom! - Candace
Sister of man w/base of tongue cancer, stage IV, Dx 4/03, finished Tx 9/03, 12 clear exams and counting!
Sister of guy w/base of tongue cancer, Stage IV, Dx 4/03, finished Tx 9/03
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#43935 10-04-2004 05:25 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Nicki,
I can't add much that has been posted already.
I think you are doing a great job as Tom's caregiver. Please take time for yourself. It will help you long term to remain strong as this journey you and Tom are on can have many surprises. Hoping Tom comes home soon and continues to heal. Remember it takes one month of healing for every one week of treatment. Measure Tom's progress in weeks not days.
Best Wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#43936 10-05-2004 12:51 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Just wanted to say "I love you."
Keep fingers crossed that he can come home tomorrow after chemo....... They haven't said as much, but I'm hoping.
Didn't go to see him today as the lawn needed mowing in the worst way. I'm baking pies to take to the nurses, the chemo room and the radiation people. They are wonderful, all of them!
God bless each of you -
Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#43937 10-06-2004 03:19 PM | Joined: May 2003 Posts: 41 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2003 Posts: 41 | Hi Nicki, hope Tom is feeling better.
I sure goofed on the back strain diagnosis.
Guess the ER goofed also missing the blood clot. Sure glad
the doctor caught it. Also glad he has you taking care of him!
Head and neck SCC
TXN2bM0 stage IV
Finished treatment 6/02
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#43938 10-07-2004 08:47 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Nicki,
I know Tom is home now and I am glad for both of you. There was no feeling as bad as laying in the hospital bed in the middle of the night, missing the family so much...
I am also hoping (and praying!) one of those pies is quickly traveling the continent looking for my house. I feel so guilty that I can't help cut your grass (and get to see the prayer garden) but one bite and I will soon forget my guilt!
Give Tom a hug for me!
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#43939 10-07-2004 12:59 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Tom's home - thank the Lord! He's looking pretty rough, and he's weak as a kitten, but happy to be here  He's going through a major bout of vomiting although he can't get anything down his peg. Tummy is too full and the constipation issue isn't resolving despite all attempts. He's miserable, to put it mildly. We didn't do chemo yesterday; postponed it until next week. The doc has offered to break this last dose into daily or weekly sessions, but I think Tom wants to gather strength over the weekend and then get the full dose in one shot...be over and done with it. Only 13 more radiation treatments! Hey, Powerlifter! When we are finished with this, I've promised Tom I'll hire a trainer and we'll both get back into shape.....may need to hire you! Tom had literally no body fat to lose, so everything that has come off him is muscle. We'll really have work to do...
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#43940 10-07-2004 02:48 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hi Nicki!
In many ways you were much more "prepared" for this than most of us as you have been nosing around here, asking questions and getting ready for the wild ride. I am sure, though, that just like most of us, you were shocked to see someone you love suffer from the treatment like Tom has. You are so special to be in the role you are and I pray every day for God to guide you through this and shower you with His love.
I remember when my mother was very ill and went down to 40 or 50 lbs. When I looked at some picutres of her after she passed away I made a comment to my sister that our mother really looked bad in the pictures and she told me the picture made her look much better than she really did in life. I hardly noticed it as we went through each day. I always thought that was the gift God gave to me so I could make it through the horrible things we went through that year.
Through that experience and a few others I have found that God drops little signs of His beauty and love to remind us that no matter how bad things are, He is close by to bring a smile to our faces when we most need it. I am praying that He touches you in a very special way each and every day!
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#43941 10-08-2004 01:54 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Ed, you are wonderful. We had a very bad day, and I needed to hear something comforting. Thank you.
I was on my way to work this morning, when my cell phone noted a message. It was the chemo nurse saying Tom did not have the option of waiting until next week for chemo...there were no openings, and he'd have to be in today. I turned around, called Tom and by the time I got in the door, I had a very unhappy - almost angry - man stubbornly sitting in bed. He did NOT want to go....we had an unpleasant 90-minute ride - then he wanted to prescribe his own dosage of chemo - Well, you get the idea. I know he wasn't mad at me, personally, but it sure felt like it. It got to me enough that I did cry..I think I was feeling like he was going to blame me for adding to the 'misery factor.'
We did make it through the chemo and the radiation....got home at 7:30.....LONG DAY. We are both exhausted, but I think I'll watch the debate, anyway.
Love you all....... I did actually come home to a lovely floral arrangement sent by loving friends! God is good!
Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#43942 10-08-2004 07:52 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | Nikki & Tom, this disease has no mercy does it? My sister who is trying so hard to be the sunshine in my life, she came on this site one time. She said that after reading all these stories she cried for days and was sick to her stomah for almost a week. I told her "WELCOME TO THE CANCER WORLD". She has always been great with me and others, our Mother also had cancer, passed away 22 years ago. She asked me how do you get on there and read this, doesn't that just push you over the edge. I told her that it kicks my butt most of the time, but nothing as to what is happening in the peoples lives that are writing the posts. One day it will be me telling that there is nothing left for me to do, and I will need support from others to help ME thru this. THat is why we all are here to help in some small or big way. I pray that things will get easier for you two, with radaition treatments still to go, I know it will be some time before "EASY" fits into your sentences. I have been there too, GOD bless you both, you are never alone,,,,,ALWAYS Miss Vicki | | |
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