#93405 04-08-2009 07:01 AM | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | OP  "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Does anyone else have an odd way of looking at things - especially when it comes to purchases or events. I find myself thinking about needing and getting a new pair of waterproof shoes and thinking "will the purchase be worth it - will I live long enough to make this a good buy?" The same thought process applies to new clothes, new glasses, etc.
I also find that I don't miss alot of opportunities to see various events. I do not say it out loud, but I think to myself - "Yes, I'd better go to the Brandon Winter Fair as I don't know whether I will be here next year". The one time I verbalized my thoughts (when we got a new pup last year) my husband thought I'd lost my north
I regularly have a long chat with myself and tell myself I am being stupid - "normal" people dont behave in this manner and then are struck by a car accidents or heart attack. None of us "knows".
I guess I wonder whether others have these thoughts? And now that I have put myself out there, I sure hope everyone chimes in and says of course they think these things!! LOL>
Dr. appointment today for check up and review of new lump. 5 years of lumps and even I think I should be more used to dealing with this!! Cat Scan on April 20th. Will keep you posted.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Odd way of thinking? Don't you mean the new normal? At least for events. I have the opposite thoughts about purchases, treating them like events I have been making more purchases that I put off, figuring if I don't buy them now, then I won't get my fair use out them (I keep shirts 20 years and things until they break) This is not odd, this is realistic now that we have been forced to face our mortality
Donna, good luck on those lumps, I know what you are thinking when you go to the Brandon winter fair - next time I may not be so lucky. Even now, trying to learn how to swallow, I have to make radiation appointments for cyber knife or else they think the cancer will come back and take my voice box. True that nobody knows about that errant car, but a better analogy is that we who have Oral cancer need to watch out for a maniac driver who definitely is looking to run us over
Of course, you and I could just be crazy but as the Fleetwood Mac song goes: Nothing I didn't already know,
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: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | Nope not an odd way of thinking...my husband was diagnosed on 12-19 and verbalized that it might be his last Christmas....he doesn't verbalize it much but I can see the wheels turning.
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | Donna,
I too say stuff like that all the time. Right after my DX we were in a book store walked by the 2009 calender. I believe I heard myself say out loud. "I wonder if I even need one of those". I really try not to do it around the kids. Kinda freaks them out.
I now say thinks like, "I survived cancer so I can drive a piece of **** car?"
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | OP "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Update: As expected, my surgeon told me exactly what I thought he would say - yes its a lump - he doesn't think it is anything but won't know for sure until after the cat scan on April 20th. I don't know what he meant, but he said what he felt wasn't "discrete enough" to be of serious concern?? Has anyone heard this before?
So we wait. Wait for the cat scan and then wait for the results. In the meantime, I will do everything possible to make sure that cancer doesn't steal THESE waiting days.
Donna
Last edited by Pandora99; 04-08-2009 10:04 PM.
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | As expected, my surgeon told me exactly what I thought he would say - yes its a lump -
That's why they get the big bucks.
Lets hope for the best.
BTW is it above freezing there yet?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Donna, I'm sure you know that Cancer can only steal what we allow it to.One thing it can't steal for sure is your willingness to give it a battle that can kick it's butt. You do have the attitude as we have all seen in the forums. Got ya in the prayers Mam.
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: Jan 2009 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 62 | Hi Donna, Good luck with your results, you'll be in my prayers. I think alot of us think the same way you do. I buy very little for myself anymore.In fact, not that long ago I was thinking we needed a new bedroom set. I decided I was nuts thinking that because I wasn't going to fix up the bedroom for my husband and his "future" wife! LOL
PS I also have been working on my own little "bucket" list.
Last edited by Buttercup; 04-09-2009 10:47 AM.
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Yes Donna I heard that a couple of weeks ago from both DRs. LOL Funny how they changed their minds and are going to biopsiy my mouth everywhere and my neck too. That neck felt like they put a wildcat in it today after I ran the weedeater, lawnmower and my old Wheel Horse Tractor. I'll give it meds at bedtime and make it happy. I sat down in the recliner after I got decent today the 2nd time, next thing i knew it was 1 1/2 hrs later and I think the pain in there woke me.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Donna, I have similar thoughts but a little bit of a different spin. I buy myself whatever I want, whenever I want it. You want to know why? Yes, nobody knows when their expiration date is. However, for us OC people it's a little more in our face (no pun intended)we are just lucky enough to realize what most people don't get a chance to. So I say...buy buy buy!!!
Buttercup...after 3 and half years I think you can treat yourself to new bedroom furniture!!! Paint, get new bedding...think how gorgeous it will be!!! You're not going anywhere, so I wouldn't worry about doing the room for your husband and his new wife (that did make me laugh though)
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | OP "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Thanks all for your reassurances. I am currently on the east coast of Canada and hope to meet Dr. Mike tomorrow!!! Very much looking forward to the free dental treatments (JUST KIDDING). But, I guess the "new normal" thinking is just part of our experience. As I landed here tonight I couldn't help thinking - "might be my last time in Halifax".... I wish I didn't think this way, but the thoughts are there before you can control them. I shall very much enjoy my weekend here - whether its my last time here or my 10th from last!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | A day at a time, that is all any of us can do. YOU are well, and going to be there again. I understand tho..... xoxo
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | After going thru what OC makes you go thru, I think like Suzanne! buy, enjoy whatever you want. Day at a time, and enjoy it with what ever makes you happy THAT day! 
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Just enjoy Donna. You will return there again and probably think the same thoughts. I wondered how your trip was going. Have a good everything you do. Jim
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | donna
Hope your doctor's visit and trip to Halifax went well
We have great memories of the one time we saw halifax on a cruise ship port stop. Wandering the downtown, we found a delightful second hand shop where my wife bought about $800 worth of coats and sweater jackets for $100. She still gets compliments on them to this day, they were so unique. (Not much Halifax couture in DC area). Keep up the good thoughts as ours are with you
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: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | I used to be be totally afraid to buy anything in the year following my diagnosis. It seemed like a waste, I could have a recurrance, who knows....
I have since done an about face. I am remodeling my bathroom, and now shopping for a brand new car(a first for me).
The way I look at--if I had a recurrance in 6 months, I would be pissed that never got anything nice for myself, and was driving a 15 year old car. Also, taking on car payments makes me think that I am going to be around for a while.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | There you go girlcat,, be positive about everything and live life to it's fullest.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I agree....good for you girlcat. I bought my first new car 2 years ago and it was so fun!! Enjoy!!
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | girlcat
Take a serious look at the HYUNDAI cars. More bang for your buck than Toyota or Honda - great warranties. We love our maxed out Elantra (moon roof, cd, traction control, leather seats etc) for less than a stripped down ford eco box. Even wall street journal wrote them up for their new uber luxury car Genesis
Enjoy
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: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | I love Toyotas--SO reliable--- but they are no fun! I am getting a FUN car---a jeep Wrangler. Not entirely practical, but I have always wanted one. I'd be pissed if I got sick again, and never had one.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | 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 do you mean, 'TOYOTAS ARE NOT A FUN CAR'. I have a 95 Red Toyota Celica Convertible with black top, leather seats and a 5 speed stick. I love it and so does everyone else. I constantly have people accosting me asking me if I'm willing to sell it. My foreign car mechanic is at the head of a long list of people who want to buy it. I'll grant you, it is not as fast as my 280Z or 300ZX but it IS a FUN drive and so reliable. It also has front wheel drive, handy in the Northeast. If they still make the convertible take a look at it.
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: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | Okay, Eileen--That does sound like fun! I was wrong!
Actually I have owned a Toyota 4Runner for the last 7 years. I live on Cape Cod so I'm looking for something to drive out onto the beach.
I'm sure you look fun and HOT in your red convertible!!! Enjoy it!
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | YUCK, Sand in the engine. Does not make for a good running engine.
I have never understood why one wants to drive on a beach. They don't allow it in NJ except off season and only at a few streets for fisher folks. I'm amazed the allow it in Cape Cod. Your sand is too soft for that.
However, if beach driving is your thing, I can see why you are looking at Jeeps. Have they solved the flip over problem in them? I have a very dead friend who flipped hers going over the Seaside Park bridge. I was never comfortable riding in one. It always felt like it would roll over any minute you got any speed on it.
Enjoy shopping for your new wheels.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | [quote=Pandora99]Update: As expected, my surgeon told me exactly what I thought he would say - yes its a lump - he doesn't think it is anything but won't know for sure until after the cat scan on April 20th. I don't know what he meant, but he said what he felt wasn't "discrete enough" to be of serious concern?? Has anyone heard this before?
So we wait. Wait for the cat scan and then wait for the results. In the meantime, I will do everything possible to make sure that cancer doesn't steal THESE waiting days.
Donna [/quote]
Thinking about my favorite Canadian and wondering if you have heard anything yet on the scan? Trust me, for many weeks on Monday morning and Friday leaving Winnipeg I thought of you often and was just waiting for the -50 to warm enough, waiting for more time, waiting for whatever and now waiting to find a reason, time and money to come back and visit. Sorry we never got to meet in person.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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