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Joined: Nov 2009
Posts: 33
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Nov 2009
Posts: 33
I wish you the best Rob. It sounds like you have an excellent team committed to wiping this out completely.

Keep us posted. It's good to hear from you.

Joel


Age 49, HPV 16+ SCC, T1N2bM0, Stage IV R Tonsil, 2 nodes, nonsmoker, lite drinker, 100 mile/wk biker, workout, play hockey, Tx:10/26--12/15/09, IMRT x35 70Gy, no surgery, Cis 1st rnd til some tinnitus loss after day 2, carbo next 3 wks, Peg in 3rd wk;still ate some solids 6th wk. 2012/05 Still Clean
Joined: Oct 2009
Posts: 28
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Oct 2009
Posts: 28
Joel, Charm, and others...

Thank you so much for all your encouraging remarks. They really help.

I hate talking about myself so much and hope I'll soon find energy to help provide useful information to others here. These past few weeks have been depressing for several reasons: (1) my cancer is not yet gone, so I need to undergo still more treatment, (2) the treatment means I'll need more time off from work, so my employer decided to terminate me, and (3) my mother is now on oxygen & drugs that amount to end-of-life care... these are efforts to reduce her chronic pain & anxiety, so she is less distressed and doesn't suffer so much.

OFF TOPIC: I have been my mother's sole caregiver for the past 12+ years, during which time I've watched her chronic pain grow worse and seen her develop Alzheimer's Disease (among other issues). This once highly intelligent and articulate woman can now barely assemble a coherent sentence. When I was diagnosed with cancer, I could no longer provide the daily care she needs; so I moved her to a "supportive care" environment where she has her own studio apartment (with her own furniture) on a floor with 24/7 staffing. [This is part of a Medicaid-funded PACE "Program of All-inclusive Care for the Elderly" (which I highly recommend) working in conjunction with a city-organized low-income housing program. PACE is a more dignified alternative to nursing home care for those who prefer to live in their own home. Using a team-oriented approach, PACE provides all the assistance an elderly person needs to continue living safely at home. We stumbled upon this 2 years ago and its been a fabulous program.] But my mother continues to decline, both physically and mentally, such that it is becoming clear she will not live much longer. In the interim, I hope for (and cherish) any small moments of joy we can share.

Rob


Dx: T1N3M0 Stage IV SCC Left Tonsil HPV16+

CT 3/20/9. FNA 3/24/9. Panendoscopy 4/1/9. PET/CT 4/22/9
9 wk IC (TPF) 4/25/9. Port 5/11/9 removed 6/4/9 (clot)
7 wk CRT (IMRT; Carboplatin & Taxol) 7/8/9. PEG 7/9/9
CT 10/19/9. PET/CT 11/2/9. ND 12/1/9
6 wk CRT (IMRT; Erbitux, Carboplatin & Taxol) 1/6/10
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