#46517 02-11-2006 10:29 AM | Joined: Oct 2005 Posts: 122 Gold Member (100+ posts) |  Gold Member (100+ posts)
Joined: Oct 2005 Posts: 122 | Amy,
I love the expression, sedation vacation! I don't remember them waking me up but they did a couple times so my family could see me awake. It was difficult having the vent and having to write questions. I do remember writing "Imitrex 100 mg" because I was having a migraine, and them trying to figure out the sub q version then putting me back under. It was weird to wake up with my hands tied to the bed rails and being told they would untie me if I didn't touch the tube in my throat. It's amazing that 3 years later I remember it like yesterday. I am thinking pink for you and John!
Sincerely,
Lisa
SCC Tongue T1N0M0\Dx 3-10-03
Hemiglossectomy, alloderm graft, modified neck dissectomy 4-14-03
3 Year Survivor!
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#46518 02-11-2006 11:18 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 | Amy,
So glad things are going well so far. I like Mark's thought of 'internet hands' reaching out to the both of you. Add me to the chain. Must be rough not being able to be with him. Do they at least let you visit for a few minutes?
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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#46519 02-11-2006 12:28 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Amy,
I'm happy it's going well so far. You will feel better when John is alert and communicating with you. Be sure to have paper and pen ready. My family didn't use a dry erase board because they didn't want me to have to write some things over again (for example, if I had pain I could reference where I already wrote that) and they also wanted the notes to go back on and to show to the docs if needed. My oldest daughter still carries one of the notes in her purse as does my mom. I laugh at the one where I wrote "Please don't leave me alone, the nurses might kill me"! I did not get the greatest of nursing care the first few days, lol.
Take care and be sure to listen carefully to anything John tries to tell you when he first wakes up. I desperately tried to relay to everyone how much my leg hurt but it took a few days for them to realize it wasn't the normal pain I was feeling, that there really was a problem. If he consistently tells you that one certain area hurts, make sure the docs check it out thoroughly.
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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#46520 02-11-2006 03:38 PM | Joined: Jan 2006 Posts: 15 Member | | Member
Joined: Jan 2006 Posts: 15 | Well Minnie, you brought back some memories for me. My sisters made sure the clipboard and pen and paper were ready, too. (Charades didn't work too well!) They kept a notebook full of pages and pages of my notes--just when they thought they could have some peace from my talking! Of course when we look at them now we can estimate what stage of pain meds I was in by the legibility.
We also used a dry-erase board to track the nurses' and aides' names each shift and also to track the pain med. times. We could let our nurse know in advance if I'd need it so I wouldn't have to wait long after it was due. The nurses and aides appreciated being called by name--it helped us develop positive relationships that I believe improved my level of care--and I liked knowing how to gauge my progress and expectations so we could ask for medication adjustments if we saw a pattern of pain intolerance.
Amy, all this reminds me of memories we made in the worst of times that made us laugh through them. We may have developed a "sick" sense of humor, but laughter is great medicine and I'm hoping you and John will be able to find (look for) things to laugh at in spite of the pain and trauma so maybe you'll both have a boost in the healing process.
Add my hands to the circle around you and John. If I could give you both hugs, I would. I'm convinced that love heals too and I'm sending that along as well.
Love and hugs,
Ruth
Ruth E. Moran
dx minor salivary gland adenocarcinoma 4/99, resection 5/99;
rec 1 lymph 2 cm 7/03, mod. rad. neck resec. 7/03;
rec primary 10/05, resec, pec flap, PEG tube, IMRT 2&3/06, Osteonecrosis right mandible removed
1/08 metastatic lung cancer, 3/08 clinical trial MD Anderson
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#46521 02-11-2006 07:20 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Ruth,
I often wonder if it is called "sick" sense of humor BECAUSE that type of humor seems to sustain some of us when we are sick, lol. My girls and I started cracking jokes a few days after diagnosis, although we had to do it away from my husband as he took the news pretty hard. It was in the hospital that he finally started to appreciate the relief humor can bring. I asked for a mirror about a hundred times before he would allow anyone to bring me one. I looked and then told him I looked just like Jay Leno with that chin and he laughed and laughed. It was a regular comedy show the day he helped me take my first shower after surgery and we both fell in. Then there was the night in the hospital that I had a bad reaction to the Ambien they gave me and I kept him up all night because I thought there was grass growing on my legs. Humor can make anything scary seem smaller.
Let me stop before I totally hijack Amy's thread. Amy, I can tell that you have a great sense of humor............use it while you are there!
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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#46522 02-12-2006 06:28 PM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | Amy
Keep on truckin and keep us posted. I'd say probably at least three hurdles passed and ya'll going for the gold. You are in my thoughts....
Peace Denise
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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#46523 02-13-2006 04:02 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Monday, Feb 13, John moved to a room today, sat in a chair for 3 hrs., got rid of a few tubes and is only taking pain meds to sleep. Onward and upward. I'm thinking about your guys. 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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#46524 02-14-2006 05:53 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | All good news still. Always good news when you can get rid of some tubes. Still thinking of you both every day....
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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#46525 02-16-2006 04:41 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | While I am laughing at some of the above posts, I will let youall know that we are home today. It was truly a case of the "blind leading the blind" I drove us home -3 hrs.[and I can't see worth s&*^} while John vented "backseat driving directions" becauce he can't talk -arms swinging wildly, etc.] but the funniest part of today was the new "checkout procedure" John instigated at Baptist Hospital this morning. He was up at 4 am. At 6:30 he cut his patient id bracelet off. At 7:30, he took the heart monitor off-and the folks at the nurse's station came rushing to our room to see if he was dead- at 8 am he tried to take his iv out[which was in a main artery and I stopped him before he accomplished that] he sat still for the removal of the trach tube and final dressing of the incisions, then while I was at the nurse's station waiting to sign release papers and get a wheelchair, he walked past us, pulling his suitcase and pushed the down button on the elevator. He was Out Of There. So, all you caregivers, please hang in with me- there is gonna be a long row to hoe here for the next little while. And thanks to everyone here who has kept us propped up to this point. I'm thinking there will be some serious stuff I will need to ask about soon. 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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#46526 02-16-2006 05:49 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Amy, I'm so glad you are home and what a fighter John is! I can relate, though, to wanting to get out of the hospital that badly (I felt that way after being there for 9 days after radiation with a mysterious fever that wouldn't go away). He must be so glad THAT part's over! Hang in there....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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