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Thanks, all - maybe I am the one who needs to chill. (herson, what did you mean by "hmmm"?) Actually, I guess I had an expectation that my husband would come through this and not want to waste time being upset about little things, which is how he was before the cancer, and how he still is. I guess that is what I thought would change in him. Maybe that doesn't make sense. I know I cannot understand how he feels internally, and I try to be supportive and offer help without insinuating how I think he should feel or be. I just really want him to enjoy life at this stage he is in right now, which I hope is permanent, because he is finally starting to feel halfway decent, and since the "odds of recurrence" are high, I want this time to be a peaceful time. Not a time of arguing about whether there is enough room to put stuff away in the fridge after a family cookout, why do we have so many sodas in the cooler, and so on. Thanks again for your insights.
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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Hi Michelle,

It's perfectly normal for you to hope your husband will respond a certain way, don't be hard on yourself about that. He simply needs some time to wrap his mind around all that has happened. Keep in mind that, for many of us, the MOST fearful time comes when we DO start to feel better after treatment is over. During treatment we are weak and focused on simply making it through the day, not much thought given to tomorrow. We also have a sense that we are fighting the disease actively, ie. raidation, chemo. When treatment is over and we begin to feel better and heal, so does our mental state. All of a sudden we feel well enough to be scared sh*tless!! And the scariest part is that we're not doing anything on a daily basis to fight this disease, we simply feel like we're sitting and waiting for it to come back. I know that thought took over me for awhile.

The worrying about things like an overcrowded refrigerator may be his way of venting his frustration with his fear and his still weak physical and emotional state. I used to tear up and cry about the stupidest things. I also had a strong instinct to NOT let my family see my fear, so sometimes it showed itself masked as my anger. It's alot for both of you to absorb, just take it slow.

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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Michele, you just gotta take it one hour at a time. 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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Michele,

The change in outlook that I experienced was definitely NOT something that happened overnight as soon as I finished treatment. It happened in small steps, month-by-month (even year-by-year) and only became really apparent to me as I had the benefit of time to reflect on what had occurred. I think that's one reason why I was drawn to the Rilke quote that's included in one of the previous posts.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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WOW!!

I just had to stop by because I was thinking of all of you today. I got an email that had the following often repeated story. As I read it, I came to realize that all of you have been my BIG ROCKS for quite a while and after reading this thread, I also realize how much I miss all of you. I hope you, too, enjoy this:

Rocks, Gravel, and Sand

One day an expert in time management was speaking to a group of business students and, to drive home a point, used an illustration those students will never forget.

As he stood in front of the group of high-powered over-achievers, he said, "Okay, time for a quiz." He pulled out a one-gallon, wide-mouth mason jar and set it on the table in front of him. Then he produced about a dozen golf ball-sized rocks and carefully placed them, one at a time, into the jar. When the jar was filled to the top and no more rocks would fit inside, he asked, "Is this jar full?" Everyone in the class said, "Yes."

Then he said, "Really?" He reached under the table and pulled out a bucket of gravel. He dumped some gravel in and shook the jar causing the gravel to work themselves down into the spaces between the big rocks. He then asked the group once more, "Is the jar full?" By this time the class was on to him. "Probably not," one of them answered.

"Good!" he replied. He reached under the table and brought out a bucket of sand. He started dumping the sand into the jar and it went into all of the spaces left between the rocks and the gravel. Once more he asked the question, "Is this jar full?" "No!" the class shouted.

Once again he said, "Good." Then he grabbed a pitcher of water and began to pour it into the jar until it was filled to the brim. Then he looked at the class and asked, "What is the point of this illustration?"

One eager beaver raised his hand and said, "The point is, no matter how full your schedule is, if you try really hard, you can always fit some more things in it!"

"No," the speaker replied, "That's not the point. The truth this illustration teaches us is: If you don't put the big rocks in first, you'll never get them in at all. What are the 'big rocks' in your life? Time with your loved ones? Your faith? Your education? Your dreams? A worthy cause? Teaching or mentoring others? Remember to put these BIG ROCKS first in your life or you'll never get them in at all. So tonight, or in the morning, when you are reflecting on this lesson, ask yourself this question: What are the 'BIG ROCKS' in my life? Then, put those in your plan first."

I love you like family!

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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I love that story. What great advice and makes so much sense in todays world where we often worry about the sand first. I think(I hope) that one will stay with me...Thanks ED!


Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
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Thank you Ed- wise words for all of us. 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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Senator13, thank you for that quote, it is the first time I have read it.

to all the others: what a beautiful thing this thread has turned into. I believe some of this should end up in the "project". Tom what do you think?

Michele, re-read the quote by rainer maria rilke:
I beg you


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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SSAX,

The quote is from Tuesdays with Morrie by Mitch Albom.


DX on 05/01/06 with SCC of right tongue. 05/11/06 surgery-tumor 1.2cm & 4 cm clear margins & parital glos. & neck dissection with removal of 34 nodes/1 positive at 4mm)T1N1MO
35 IGRT & 3 cycles of chemo (1 cisplatin & 2 carbo-complete on 8/9/06.
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Mark is right, this has turned into something special. This has been a bad week for Jack with multiple complications and the thougts expressed here have kept me going. I'd like to add my favorite quote by Louisa May Alcott - "Far away there in the sunshine are my highest aspirations. I may not reach them but I can look up and see their beauty, believe in them, and try to follow where they lead."

Every day is another chance to try again.
Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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