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#114316 03-19-2010 05:24 PM
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As part of my Lenten penance for posting a direct link to an article even though Brian had hustled it up for the OCF news, I thought I would point out a very provocative article from the New York Times that appeared in the OCF News Feed to all those who don't check OCF news feed religiously:
Here is are excerpts to entice you[quote]
We’re all familiar with sentences like this one: Mr. Smith died yesterday after a long battle with cancer....It’s one of the clichés of cancer... We like to say that people “fight” cancer because we wrestle fearfully with the notion of ever having the disease. We have turned cancer into one of our modern devils......How can it be a battle when we patients are the actual battleground? We are caught in the middle, between our doctors and their potential tools of healing and the cell-devouring horde.[/quote]
So sign up for the free OCF news feed or put it into your Google reader and you won't miss great articles like this one
Lets Face it, Words are Inadequate for Cancer -
Charm


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
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Posts: 1,412
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WOW, I could not say it better myself. Thank you.


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
Joined: Sep 2009
Posts: 700
Likes: 1
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Thanks for posting this. I have signed up for the news feed but did not get this. Anyway, this is so perfect. Great article!


Anita (67)
CG to husband, Clark, 78,
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, PEG 7/21 still recovering
Joined: Jun 2007
Posts: 5,260
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There were 3 in last nights apaper with the same words. This wording has been the standby it seems every where. One last nite was one of my friends and 1 year older than me. Thanks Charm.


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
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For me, the author best summed it up in the last paragraph / sentence:

"So, no, cancer isn’t a battle, a fight. It’s simply life — life raised to a higher power."


Diagnosed: 16Feb'09
Pre-op Dx: Tongue SCCA Stage IVB (T4N2cM0)
Opn: 2Mar'09. Total glossectomy, Neck dissection (Levels I-V), bilateral; Anterolateral, Thigh flap recon'n; Tracheostomy; PEG
Decanullation: 24Mar'09
IMRT x30, concurrent with chemo (cisplatin) x3: May-Jun '09
PEG out: 23Oct'09
Joined: Aug 2008
Posts: 96
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"Ronald W. Leonard, 56, a lifelong resident of the Lake Geneva area, died Saturday, June 6, 2009, at his home following a long and courageous battle with oral cancer."
This paragraph began Ron's obituary and apparently it was a cliche. I was more than a little offended by this article because Ron DID fight a long and courageous battle--he just happened to lose. I am amazed to see that you other cancer survivors apparently agree with this article. Now, I fully admit that I am still deep in grief so perhaps I am being too sensitive, but with all respect to Mr. Jennings, Prostate cancer is MUCH more survivable than Oral cancer and I would think that you would all know that.
You may call cancer a journey or a life lesson or "life raised to a higher power", but those seem like cliches to me too. Ron always felt like his cancer was a battle, and he fought it with everything he could. I think anyone with cancer is in a battle-they just don't know if they are going to win the battle or not.
Lori


Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
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Lori- I couldn't agree with you more. I reached out to two other women my own age (30's) who had tongue cancer. They both did not survive the disease- both had children loving husbands families and friends. Everything in the world to live for. They fought so hard for thier lives but for whatever reason the cancer spread and metastisized for them but not for me. Cancer is a disease- it doesn't have any rhyme or reason whatsoever. It doesn't care how much you want to live. Its just cells multiplying. Sometimes the Drs. can't get to it in time and stop it and sometimes it just doesn't respond as well to the treatment. Yes a positive outlook and a fighting spirit help immensely to get through through this but for anyone to think that someone who dies from cancer didn't fight as hard as those of us who got lucky and happened to survive have it all wrong.

I think they didn't mean harm- the wording just wasn't right- but people should be more sensitve.

Your Ron and all of those who weren't fortunate to survive cancer are MY heroes. I know what I went through and I know they went through 1000 times more.

I thank my lucky stars every day. I know I have so much to be thankful for.

I know this must be a very very difficult time. I hope one day soon the happy and fun memories will start to eclipse the memories of his illness and struggles with this disease.

Last edited by misskate; 03-22-2010 10:43 PM.

Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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Misskate,
Thank you so much for your kind post. I was worried that I would be slammed right away for my comments. I freely admit that at this point in time, it seems that I have no impulse control as far as my emotions go. If I feel it, you can be sure I am going to say it. Perhaps this is a part of the grieving and healing process. It's a very freeing feeling, but it may get me in trouble. I am so glad you are doing well and I wish you all the best.
Lori


Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
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Posts: 3,082
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Lori

thank you for making me an honest man. I prefaced this thread's first post with my opinion that the New York Times article was
"provocative" , yet until you posted, there was nothing provocative at all in the OCF responses. Your responses are perfectly acceptable in this forum since it is expressly for coping with anger/fear. Who wouldn't be angry in your shoes?

Even though it is not politically correct, I also find myself angry at the tone & tenor of many articles by prostate cancer survivors who seem to think their experiences of an easily curable and highly overtreated cancer (estimates range as high as 70% of prostate TX were never needed as the tumor would have grown so slowly the patient would have died of old age first) are universally applicable to insidious cancers like OCF patients and caregivers. You simply do not have the watch and wait option with oral cancer. In this case, I just told myself, yep - finally an honest prostate cancer guy admitting it wasn't much of a battle. Too bad he thought he was representative of anyone with oral cancer. I've seen prostate cancer up front and personal when my Dad was diagnosed with it twenty five years ago and don't discount the anguish and fear that any cancer causes a family but from where I sit, oral cancer is much much worse. (and like most prostate cancer patients, my Dad died of something else - heart attack). Sorry for your loss.
Charm


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: Sep 2009
Posts: 700
Likes: 1
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Lori,

Thank you for your point of view. Until your post, all of the responses were from survivors or CGs to survivors. And that is the difference.

When my husband was recovering from his first surgery and had just started rads, I wrote a poem that I titled "Battle". It was my perspective of his cancer and writing it was cathartic. I think most people mean well when they refer to Clark as brave. However, he does not see himself this way. Cancer and the issues surrounding it are forever a part of our lives now, inconvenient and ever present. Like a leaky roof--your don't know when it will leak or how bad it will be, but you have put out the pots, and call the roofer. To quote Roseanne Rosannadanna. "It's always something!"

I am so sorry that your Ron passed away.

Anita


Anita (67)
CG to husband, Clark, 78,
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, PEG 7/21 still recovering
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