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#152056 07-14-2012 02:13 PM
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jennie Offline OP
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Today as I was doing some laundry I thought to myself...everyone always hopes for a normal life...I assume normal is easy, little crisis, happy, healthy etc. etc. but I now am begining to believe that normal is the crazy life we have...radiation side effects, back surgeries, teeth breakage, cancer reoccurrences, root canals that result in hospitalizations, vomiting from wrong meds being given, waiting for a little gas to pass, the taste of hospital food, the mountains of bills and all the rest. So I decided that from now on, I'm going to stop wishing for normal, because NORMAL SUCKS, give me an abnormal life any day. Those abnormal days are what keep me sane!


Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
jennie #152058 07-14-2012 02:26 PM
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Hi Jennie. I get it. Actually I'm over it all. I just want my life back. And my husband. Guess I've hit a trough?
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
jennie #152062 07-14-2012 03:04 PM
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I understand your way of thinking. So sorry to read of all the struggles you have in your daily life. Wish I could say it gets easier but sometimes it doesnt. I guess we just adapt and adjust to a different way of life.

What a trip down memory lane when I think back to what my old life and normal used to be like. I never in my wildest dreams would have thought going in for a routine J/G tube change without being knocked out would be something normal I would do. Setting up my tube feeding every night is now routine as is taking meds and worrying constantly about my nutrition and hydration intake. Its amazing the new life that we get used to living. Even with our rough patches, it sure beats the alternative.





Christine
SCC 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 smile
jennie #152069 07-14-2012 05:10 PM
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Jennie & Tamvonk

From this patient's perspective, let me say that I am in full agreement with you ladies. I feel guilty sometimes for stealing the "normal" life my wife and I were supposed to have. Of course, just like you heroines, she keeps a brave face up for me and never ever blames me.
No sympathy here (since that implies pity) but plenty of empathy.

At first, I used to dream that all of this never happened. Probably because I'm old enough to remember Season 7 (1985)the original Dallas TV series, when Bobby Ewing "died" only to find out in Season 8 (1986) that Season 7 and Bobby's death had all been a dream. Oh, how many times have I wished that all this cancer was a bad dream and our lives were whole the way that we had planned.

Yes, let's hear it for the "abnormal" days . Our hope lies in the fact that psychologists' and psychiatrists' studies uniformly show an "emotional baseline "suggesting that most people inevitably return to a certain emotional baseline after circumstantial highs and lows. Tincture of Time
Keep the Faith
Charm

Last edited by Charm2017; 07-14-2012 05:11 PM. Reason: typos

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
Charm2017 #152073 07-14-2012 06:47 PM
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Interesting thread, I agree with all of you. I know what you mean Jennie-you've had a rough few weeks for sure. Watching your Erik go thru another surgery and another recovery...it is tough for sure.

Tammy I think it is every bit as hard to be the caregiver angel as the patient.

Christine, you are right...somehow we manage to adapt to our new imperfect lives. Maybe because in the back of our minds we know we have come thru such a big battle that we need to just be happy with what we have... I know I for one am grateful.

Charm, you always know the right things to say.


DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
jennie #152082 07-15-2012 03:23 AM
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Eckhart Tolle said: ". . . what you resist persists". As I see it, resistance is non-productive and so we learn to accept, adapt and appreciate. When life throws us a curve, we can ask why? - and certainly have the right to be angry but more important is �Where do we go from here?� OCF helped me to see that, and I am grateful, too.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Anne-Marie #152084 07-15-2012 05:01 AM
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Charm, you have said it perfectly for me. Many times I have said to Kris that perhaps this is a bad dream that we will wake up from.
I even wish there was a parallel universe we could slip into where the nightmare just isn't happening.
Back to reality. I know we will adapt and accept this new normal for us but hell I grieve for what we have lost.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
jennie #152097 07-15-2012 07:40 AM
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I think grieving for what we have lost is an important part of recovery. It is sad that our lives are forever changed. I miss the things that my husband and I used to do together. I have to constantly remind myself that it sure does beat the alternative. Clark and I have had to rearrange our perspectives and when you get to the core, it is what it is. So we go on and make the most of what we have and where we are. The simplest things have become more important...like watching the sun set, observing the fox in our backyard, enjoying a funny movie, and spending time with our grandchildren. And then I think, we are pretty darn lucky.

My best to you all-
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
jennie #152254 07-19-2012 01:17 PM
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Oh ya it's always different every day in my house. Never know is he in a good mood, sad mood, angry mood, happy mood when I get home from work. I talk to Ron at lunch time every day and than not til I get home unless he calls me for something while I'm at work which is very rare and scares the hell out of me when my phone rings and it says "HOME" my stomach always drops and I always ask "what's wrong" and he laughs at me. Not funny! But ya since 2007 our lives have never been normal...hell I don't think they were normal ever...so I live each day as it comes and live it to the fullest!


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed

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