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#150701 06-11-2012 08:24 PM
Joined: Aug 2011
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Kerri Offline OP
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I am and always have been "emotional velcro". I'm not sure where I'm heading with this post, but I just have to say some stuff. Everything sticks to me and I have such a hard time letting things go. When I hear someone else's misfortune, I often get this paralyzing fear that the same thing or worse is going to happen to me. I know this is childish and self-centered, but I have to "own" it. I tend to let these things paralyze me with fear. I become afraid of everything and end up wasting so much time because I would rather just escape by sleeping or watching TV...just sitting inside my house on a gorgeous day. The thing that adds to the negative emotions is the guilt that I feel for bringing others down with me. I have two beautiful little children. I don't want them to learn this from me as I learned it from others. I need to break the cycle. I need to overcome this inertia and get on with my life. I don't want cancer to define me. Yes, it's part of me and always will be...hopefully, just part of my history. But, there is always going to be something...something on which I can place blame for my inaction. It's time to put on my "big girl" pants and grow the hell up.

UGH! Sorry to vent. I've gotta let the crazy of the leash sometimes! Yes, I have a therapist.


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
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Joined: May 2009
Posts: 1,412
Kerri,
I feel the exact same way. I am just happy sitting in my recliner watching TV or,doing things on the computer to escape reality. I too often think that a recurrence is not too far away. I also have two beautiful boys and one on the way. I keep thinking I am must be crazy to have wanted another child, and the fear of this stuff returning is overwhelming. You are not alone.


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: Feb 2011
Posts: 117
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Posts: 117
Hi Kerri, I know how bad you feel (and about whom). I share your pain. However, you and I were able to beat this horrible disease for a reason while others were not so fortunate. You, because you have 2 small children to raise and myself I think it was so that I could help other OC victims. so take some time to grieve for the sadness and the unfairness of the news we got today about our mutual friend, but then do what you say and put the big-girl pants on; raise your babies to be good people with huge hearts and do it for those that did not survive. and vent here any time you need to,sweetie.


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.
Joined: Aug 2011
Posts: 596
Kerri Offline OP
"Above & Beyond" Member (500+ posts)
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Posts: 596
Thanks, ladies. I know we all are in this together. I'm grateful for having such friends. xoxo


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Joined: Sep 2006
Posts: 8,311
Just remember......

Kerri-1, Cancer-0


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: Nov 2011
Posts: 60
"OCF Down Under"
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Nov 2011
Posts: 60
I keep moving to try to stop myself from thinking. I'm not that good at concentrating so I just keep moving.

All the best. Laura


CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Patient Advocate (old timer, 2000 posts)

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I know how difficult it can be to get past being a patient and worrying about 'what if'. Glad you have someone to talk things over with. This is one thing that makes OCF such a great place, we all get you and its ok to let off some steam here. We are all in the same boat! I find volunteering and helping others is what helps me get past my own problems.

(((HUGS)))


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
Joined: Jan 2009
Posts: 476
Platinum Member (300+ posts)
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Posts: 476
I'm not the patient but caregiver and the fear can be just as overwhelming. It breaks my heart and saddens me to the core when I think about the beautiful, amazing, strong people who have lost their battle with this beast. I usually go to Zumba on Monday nights but I just couldn't last night. I felt so sad and scared that my husband could be the next one with a recurrance. I try to think about all the amazing, strong SURVIVORS on these message boards but when you hear the devastating news that we shared yesterday it just sucks the breath right out of you.

I can't begin to know how it feels to be the patient worrying abouot a recurrance but it is just as scarey to be the caregiver and feel totally helpless at times.

Today is a dark, dreary day in Pennsylvania and it definitely reflects the way I feel today. All we can do is keep fighting the good fight. Hugs.


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
Joined: Aug 2011
Posts: 596
Kerri Offline OP
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Hugs back to you, Wanda. Thank you for your post. It's from the heart. Sometimes I wonder if I'd be strong enough to be a caregiver. You are amazing people, going through the journey by our side and not fleeing or giving up. It takes an exceptional person to be a caregiver. I am grateful to have the wonderful husband, family, and friends. I would be nowhere without them by my side.


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Aug 2011
Posts: 596
Kerri Offline OP
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Thank you, Christine and David. I know you've been through and have seen lots of stuff. I'm grateful for all of your hard work and support. Hugs to you all!1


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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