| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | What a surprise this morning over breakfast to open the Washington Post and see my article on page two of the Health Section. I submitted it a week ago by email and they replied that editors "would be in touch" about publishing it but instead they just printed it. Sp here's the article itself cut and pasted from the Post's web site. The print edition has a different title: Savoring the sight and smell of food kissed by love
[quote]Cancer of the tongue doesn't take all joy from sharing meals with a loving wife
Tuesday, June 29, 2010; HE02
My second bout with stage IV cancer at the base of my tongue required surgery that left me unable to swallow. I no longer can eat or drink or taste. The medical term is aphagia, but to me it's excommunication from the social celebration of breaking bread. Doctors consigned me to a lifetime of cans of prescription nutrient put through a feeding tube directly into my stomach.
For my wife and me, who loved every type of food and reveled in Washington's smorgasbord of Asian, European, African, North American, South American and Australian restaurants, this was a personal disaster. I cried watching Oprah's shot of Roger Ebert's wife eating alone while he used his feeding tube upstairs: She wanted to spare his feelings, and it is difficult not to feel deprived when others eat. Travel is no longer the same, and the Transportation Security Administration indignities pale in comparison to the loss of new tastes and dishes.
We venture out to restaurants, where I bring my cans and syringe. As it turns out, wine works very well with a feeding tube. Beer not so much. Luckily I was never self-conscious, and the few stares when I whip out my feeding tube don't bother me.
I refused to lose the joy of sharing with my wife the food she has always cooked with love for us both. Now she prepares regular dinners as before and sets me a plate full of colorful food. I savor the aroma, then dump it into our Vitamix to undergo a transubstantiation of texture from solid to liquid. We sit at the dinner table and laugh like we used to after saying grace over our meal. It's what cancer survivors call the "new normal." Charm2017 Alexandria VA[/quote]
I'd give the direct link but that would reveal my "secret identity" (although several cyber-sleuths on OCF tracked it down already). This is the final culmination of an article on not being able to swallow that I started for Brian and OCF but kept ending up too depressing and full of self pity and too long. The Post had a limit of 300 words plus requires it not be published anywhere else first, which let me focus in on the positives. So it's okay now to post it here at OCF. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Great piece. Your attitude is inspirational. Keep 'em coming.
d2
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | What an attitude, Charm. You are very much admired and your wife is a lucky woman. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | I saw that this morning and figured it was you!
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Great article, Charm. I am in awe of those who write well and your piece is beautiful. I am intrigued by your "secret identity."
All my best-- Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2010 Posts: 201 | Great article Charm. Your writings are inspirational to many!
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads 1/10/2011 Clear PET!!!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Way to go Charm!!!!!!!!!!!
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 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Wow Charm!! While reading this a felt like a fly on the wall watching you and your wife lovingly share a meal in the way that works for you both. You painted a wonderful picture..great article. Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Apr 2010 Posts: 45 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2010 Posts: 45 | Charm - I have never conversed with you on the forum but I've got to tell you that you are one hell of a man!!
2002 - SCC - T1N0M0 - ever vigilant
| | | | Joined: Jun 2010 Posts: 111 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2010 Posts: 111 | yea whats up with the secret identity?! do tell! great article!!!! what a small victory 
my mom, age 59.
12/08 surgery & 33x rad 4/09 recurrence 5/09 surgery & 35x rad 12/09 recurrence 1/10 surgery. peg tube, trach, fibula free flap 6/10 recurrence. double chemo treatments. 8/10/10 finally at peace in heaven | | |
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