#44087 10-26-2004 09:31 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | OP  Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Alleluia! We made our last daily trip to UVA yesterday and feel like we have been sprung from jail! Tom is incredibly weak and gray-looking, but happy to be home. Those long drives took a lot out of him.
We are to let him 'cool' for about 2 weeks before a scan, and our appt with the surgeon is on NOv. 11th. The radiation doc said we'd be discussing surgery or the 'wait and see' option (!?)....didn't think we'd have an option from all I've read from all of you!
You would not believe the 'welcome home' we received! Our driveway is about 1/2 mile long.....Tom's company (he owns a landscape contracting co.) came out and put up a huge "FINISH" line, complete with an arch of balloons towards the end of the drive, and then lined the rest of the drive up to the garage with signs and balloons......awesome and overwhelming...! There were huge balloons and "We Love and Miss You" signs in the house..and one of our Mexican laborers planted a big ol' boot with fall plants...really neat. An arch of balloons was above the mantle, even had a huge bouquet of balloons in the bedroom!
What an emotional homecoming. Could hardly take it all in, but the love was wonderful!
I'm off now to take him to the LOCAL doctor for his blood problems. this, as least, is an easy ride!
Love to all of you, and thank you for your terrific support and the wealth of information you have provided. I'll keep you posted on what happens next......
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.
| | |
#44088 10-26-2004 09:55 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Congratulations Nicki and Tom!
You must be a great couple to have so many people care about you so much.
Onward and Upward guys.
Take care
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
| | |
#44089 10-26-2004 10:01 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Nicki,
Congratulations to you and Tom! Even though it's been years, I still remember that "sprung from jail" feeling.
As some of the others here have said, the recovery process can be slow and sometimes frustrating after the radiation stops, but hopefully it won't be too long before he starts to see some improvement. At least you now have some respite from those long daily drives!
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#44090 10-26-2004 10:10 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 | Congratulations on making it to the finish line. What a marvelous surprise from his employees. Must have lit up both of your days. Certainly lit up mine.
I remember that marvelous feeling - NO MORE MASK - on the last day of treatment and I only had to drive 5 minutes to get to my treatments. They will never get something over my face again.
Again, congatulations and enjoy
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
| | |
#44091 10-26-2004 11:10 AM | 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 | Congratulations Nicki and Tom What a joyful welcome home. I felt very proud of myself when I completed radiation and now know that it was worth it. My clinic tends to the 'wait and see' approach. Love and light from Helen 
RHTonsil SCC Stage IV tx completed May 03
| | |
#44092 10-26-2004 11:27 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Nicki, I'm so pleased for both of you. Please keep in mind that the next 2-3 weeks will be a little difficult, but you are almost out of the tunnel at the end of which is a light. It sounded like your welcome home was very emotional, that's a good thing. One thing about this disease is it sure brings out the emotions in people. As far as the surgery goes, I recommend Tom have it done as it is very simple compared to rad and removes any chance of this cancer coming back. After all, if it is surgically removed, it can't come back. A different one may develop, but this same one will be in the pathologists trash after he tests it. I get great images of mine in the trash and then being thrown into the furnace for an appropriate ending. At any rate, I have been waiting for this posting since your first post a few months ago, congrats to you both.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
| | |
#44093 10-26-2004 12:56 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 | Nicki (Tom, too),
I was smiling, sobbing and cheering as I read your post. Tom is surely the type of person I would like to work for based on the wonderful celebration at the finish line! It was so much fun to travel this journey with you and I am honored that you kept us all informed along the way.
I had the "wait and see" treatment, too. The scans have shown no signs of cancer for over a year but for some silly reason, I am still second guessing the decision to not have surgery. If I knew what I know now about this dreaded disease, I believe I would have opted for the surgery after radiation. Just my two cents worth.
I trusted my otolaryngologist since he had the experience and mine was already stage IV with 2 lymph node involvement.
I know today was in important milestone and you should stop and enjoy the moment. All I really remember from this period of treatment was running to the toilet because when I looked in the bathroom mirror, the image I saw scared me a little. My wife nicknamed me Jarjar Binks because I just darted across the mirror.
May God continue to shower His blessings on you and Tom.
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
| | |
#44094 10-26-2004 01:59 PM | Joined: Sep 2003 Posts: 153 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2003 Posts: 153 | Welcome home,
i expect the couch will be well used for a few weeks. Naps are so nice after radiation.
relax and enjoy,
cu,
larryb | | |
#44095 10-26-2004 02:27 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | Nicki and Tom,
Excellent news to hear that radiation is complete. You guys got a well deserved homecoming. Keep us posted on how things are coming along.
D
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
| | |
#44096 10-26-2004 03:19 PM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Nicki,
Congrats on getting Tom home. I was so happy on my last day of radiation at MDACC when I threw that mask in the trash, rang the bell, and went home. Little did I know that the hard part had just begun. Something about seeing those people everyday and even twice a day and being proactive about getting treated, energizes us. But once treatment ended, I got very depressed for the first time and thought...at 8 AM, " what do I have to look forward to...my noon tube feeding?" I say this not to make you sad, but to prepare you, as others have done, by mentioning that the first few weeks after radiation can be very difficult.
The good new is that once I started taking a walk every day, made sure that a friend or two visited every day, ran a couple of simple errands, and even got some counseling, things rapidly improved.
Best of luck and take care...of both of you.
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
