| Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | I have been lurking around here for a few hours, reading, laughing and crying, wanting to reach out and post, but for whatever reason, nothing sounds right. Just want to tell you all that you will be in my thoughts. Love and peace to all.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Donna!!! Love ya lady, good to see you postin darlin!
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Hey Buck!! Hopefully my brain will engage soon, something is just not right since the accident. Read so many postings last night; thought of so many friends I have met here, some that I still have the pleasure of conversing with and others who have passed on. Miss you all! It still amazes me the impact everyone, absolutely every single person I have met here, has had on my life. I continue to feel so blessed to have been given the opportunity to know you all. Brian, you have given us all such a tremendous gift, as always, thank you. For those of you who have posted the question, is it worth it? To me, the fact that you took the time to have found this incredible site, tells me that you are up for the challenges you will face. You will all become superheroes, battling the daily tasks that you must face. Your endurance amazes me. Even if you are afraid to move, speak, breathe...you have found a haven here at the OCF. I was primary caregiver to my mom, it was a scary time, but 'family' here at OCF held my hand and guided me through...now they all hold my heart forever. Mom is still going through post treatment effects, but she is here to tell the tale. I am so proud of her, her spirit is beautiful, even on her not so good days. Love and peace to all, Donna
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Tears welling up in my eyes! I hope to see you posting more often. Take care sweet Donna!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | What accident Donna? Did I miss something? Good to see you back and glad Mom is doing well.
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
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Geez Donna, why have you been lurking? I miss your posts and I seem to miss you in messenger. Stay visible and hug us sometimes as we all need that.
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: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I missed the accident part too. When where and how? I hope you aren't like me and forgot too many things in the past.
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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | I was in a car accident with Eddie on Jan. 30th. We had to stop suddenly while coming round a curve (deer!) and the car first went down the its nose and then rolled 3 times and once the wheels hit the ground it propelled into an embankment-thankfully a tree or pole stopped us from hitting head-on! It all happened so fast, I had my seat belt on, was jostled around a lot. I think I hit my head but to be honest, I can't say for certain. Ed didn't have his seat belt on, he was thrown from the driver seat into the back seat! He broke two bones in his neck, he has since healed and is ok. I've been having tremendous issues with connecting my thoughts, finding words, following directions and follow through. I also have found myself getting lost, very upsetting to me. My family doctor is a wonderful man, I don't know if I haven't expressed myself properly or if he doesn't believe me? he doesn't appear to concerned. I am going to talk to a psychiatrist (spelling? spell check not working today!) this week. First, I need to get the referral, which means another appointment in there and feeling like I am not being heard. (Just now it took me probably two mins to find the word referral.) Sometimes I am fine, other times it's hellish. I still have significant pain at times in my neck and shoulders. My doctor has told me its my first rib going into my neck. My head feels to heavy for my neck. Have yet to get an MRI. I just want to be fixed-feel broken. Not to mention, I feel exhausted all the time. Feel like a big baby complaining, I am here, just wish my brain would stay "on".
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | Joined: Jun 2010 Posts: 87 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2010 Posts: 87 | Yikes, Donna. I am new to the forum so I was not around when your mom went through treatment. But after reading about your accident I wanted to throw my 2 cents in. . . I am not a doctor but am an ICU nurse and your symptoms are similar to what someone who has had a concussion might experience. Did you have a CT scan after the accident, and have you been examined by a neurologist? If I were you I would try to get to a neurologist rather than a psychiatrist. If your family doctor won't take you seriously I would get second opinion from another family doctor or better yet internal medicine MD. I know you might really like your family doctor and may have a lot of loyalty for him or her, but believe me when I say some doctors are a whole lot better than others! Good luck !!
Susan Age 51, married with four kids age 11-18, 9/1/2010, Bx: high grade mucoepidermoid CA left sublingual gland. 10/8/2010, wide excision left floor of mouth, modified radical node dissection left neck. T1N0M0. IMRT started 11/22. Never smoked, light social drinker Also happen to be ICU RN | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Yikes! Donna I am so sorry for all you have been through. It does sound to me like you had a concussion. I too would try to get a second opinion and get someone to give you an MRI ot CT at the very least.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
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