| | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Hi Patty,
I am so sorry about your recurrence and your family situation. I was my mom's caregiver when she had pancreatic cancer, and I ended up having to put a sign on her door saying "Not feeling well today. No visitors please". Then just lock the door and don't worry about it. YOU come first. Carolyn will have to be your advocate. You can't stress yourself out, she can deal with the family. You are right when you say that Ron and you seem to be in the same place. Just remember, you are not alone. We are thinking of you constantly. Please take care.
Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Lori, Suzanne, Gabe and Liz and all of my wonderful friends. I officially turned some family members into spam today and that will help. Carolyn says that she is up to it and I will pass on all of your wonderful advice and experience. The legal paperwork will be in place by Weds - then I just will put a guard out front if I have to. It is my time and my wishes.
I'm going to get some more rest. I have a good friend here with her daughter and we are working out some of the details with my dogs.
I am able to keep dairy down again and that will help me pack on some more pounds. The recliner will finally get her Monday and once I am wireless in the living room it will be easier to communicate.
Thank you for your support - for the help to be strong. I am thinking of all of you and praying for you Lori and Ron. So glad that we have each other.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | As always Patty, my heart goes out to you. We are always here for you and I think about you everyday. You had me laughing that you made your family Spam....lol Take care of yourself. Good for Carolyn to take care of the family...sisters are great!!
xoxo
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I am just checking to see how everything is today? I hope you are able to enjoy some of this weather Patty and be with your dogs a while and enjoy them.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Patty
I check for your updates everyday. Hope you are feeling ok today. Glad you are able to eat dairy products. Yoplait makes a very good smooth yogurt, Ive also heard raves about Soneybrook but never had that kind.
Too funny about family members being turned into Spam. Most of my relatives fall into the "spam" catagory. You gotta do whats necessary to take care of you and your doggies.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Dear Patty,
You are in my prayers daily as well. I wish you strength and courage and peace.
Love,
Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I like how you did that to the relatives Patty. That made my day so much brighter than it was. I get down and that must be the reason for me wroking all day long and into the nite in the house. But you just made the sun shine with your post.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Hi Patty have been watching and reading posts and just want to put my 2 cents worth in....I hope you can feel confident in taking care of #1 the Good1....lol....I am sure you are just as fiery as ever and I just want you to try to do everything that is important to you after all this is about you not your family ...
I say liquidize and go on one heck of a world tour... with a OCF family memeber at every stop...take care my friend and look forward to hearing from you!!!
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Had a very nice first part of the week. Yesterday the apple tree was in full bloom. I hope to have apples this year. It is a golden delicious and they are wonderful cooked or in juice.
Juice is now my favorite drink. Blueberry is good, banana/strawberry is great. I add 4 oz of prune juice to some breakfast blend to try to stay ahead of the pain meds.
Managed to get more food in each day so that will help. Now I am focusing on learning when to take the pain meds to keep everything under control. I see the GP today about the depression. I had to stop my Effexor because it was time release so now we need to find a replacement. I am not a crybaby although I know that there are benefits to crying. Right now I just swell up sometimes w/o warning.
I am getting lots of drainage from the lower abscess still - changing the dressing 3 times a day at least and I could repack it more than once I just have trouble getting it started. Me and the doc will work this out this week so that all this icky can get out of me.
The recliner arrived today. Katie is not sure about lying in it with me yet. Marshall is all for it. My friends have been here and we have the dog arrangements started. One of my uncles was vet to Lettermen's dogs in CT and has offered to help if I need help placing them. He once had a Doberman that went down to the store at night and went shopping by itself and then the store owner would send him a bill. My aunt died from ovarian cancer last year and she was a remarkable lady. she lived 3 years longer than they predicted. The will is at the attorney's office so I can sign it on Weds. I am getting some peace of mind at least.
So happy to make you laugh Jim - laughter is very important you know. There is something to make you smile in everything. thank you Christine and Lori for thinking of me. Lori I pray for you and Ron each day. I hope that your journey is also fairly smooth right now. Suzanne, you old married lady - i can still feel your big smile clear out here in the fields since that wedding.
Two ladies from my church want to come and clean my house on Thursday so I invited my mom over with them so that she can help and learn a little about compassionate service. She doesn't know about the lesson plans yet. LOL
Well I am of to hook up to the pump for a couple of hours and rest some more. I sleep very hard so I am a more tired than I know.
Lots of love and hugs.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Patty, I am so proud how you can figure out how to work lifes lessons into the daily routine of people. LOL No wonder we are friends. You are devious and I love it. Mom should be learning a lot from daughter. I hope this day, that is supposed to get wet, but enjoy it.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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